Eby Jeebies

Plagued

2012-02-10T15:25:00.001-05:00

I didn't knock on wood after publishing my last post on Monday in which I bragged that Elijah had "sailed through these disease-laden seas without even a sniffle." Tuesday Elijah was fussy. He took a six hour nap with only one short feeding in the middle. When he finally awoke he had a nasty cough and low grade fever. According to the nurse on call any fever in a 2 month old warrants a trip to the ER, especially when he's been exposed to strep. So back I went, just two days after taking Toby, and yes, at least one nurse recognized me. It was busier without the Super Bowl to keep the crowds away, but at least I had the entertainment of watching a handcuffed man in a triage room being treated for pepper spray exposure.

All I wanted was for Elijah to be tested for strep throat, but of course the ER doctors felt it necessary to treat his fever with full doses of Tylenol and Motrin, so after the nurse choked a huge syringe-full of red-dye-laden medication down Elijah's throat he was more miserable than ever, gagging on the syrupy mix, and I wished I had refused the unecessary medication. Next time I will. I'm so tired of every hospital serving up enormous amounts of petroleum based dyes to every child that walks in its doors. Anyway, both the tests for strep and RSV came back negative and we were sent home with orders to use a vaporizer and Tylenol to keep him comfortable while he got over his cold.

Toby also had a rough day Tuesday. The antibiotic had gotten rid of his fever, but the sore throat and fatigue lingered several days more. He would lay on the couch, then get up and attempt to play, then return himself to the couch, which, if you know Toby, means he's really feeling crumby.

On Wednesday I found Emma wandering slowly around the house with a blanket over her head. When I asked her what she was doing she said, "I go."

"Oh, you're a ghost?" I guessed.

"No! I GO!" she yelled back at me.

I thought a moment then asked, "You're cold?"

"Yeah," she agreed. "I go."

"You're cold, so you're walking around with a blanked on your head? Oh, Emma, you're so silly," I laughed as I leaned over to kiss her forehead. But as soon as I kissed her I realized she wasn't so silly after all. She was burning up. Her temperature was 103.3. I gave her Tylenol and put her to sleep on the couch.

On Thursday, Emma's fever lingered, but lower-grade and slowly improving. She never got a sore throat. Elijah developed a crusty eye, but it never turned really pink. His cough got worse. It seemed he was constantly coughing and gagging on the thick mucus that filled his nose and throat. I spent the entire day tending Emma's requests and bouncing Elijah up and down on an exercise ball, which seemed to be the only place he could tolerate life.

Last night Elijah's coughing fits kept him up for awhile at 1:30 and 4:30am. I brought the ball up to our room and sat in the dark, silently bouncing the poor, whimpering baby and wondering when this was all going to end. Apparently not any time soon.

Today Emma and Toby are feeling mostly back to normal, but Elijah continues to cough and gag. Then Naomi complained just after lunch, "Burrr! I'm cold!"

"No!" I said, "No, no, no, no, NO! Will you guys stop getting sick?!"

Naomi laughed at me. After a long sigh I took her temperature. It was 101. To the couch she went and there she stays. I gave her some Tylenol for her headache, which seems to have helped a little, but she is complaining of feeling dizzy now.

And how am I? I have a little sore throat and cough, but I feel like I am living in a fog. Gray day follows gray day of taking temperatures, doling out medications, and soothing coughs. I feel as if I've been placed under house arrest for two weeks now, and it doesn't look like I'm eligible for parole any time soon. I'd like to get to the store, but with Matt working 56 hours per week, he's not providing much respite care here. My shopping list reads: "Children's Tylenol, Kleenex, VIC's Vapor Rub, Vitamin D supplements, Culturelle, and Lysol Wipes." That pretty much sums up this week.

If you've ever read "Dr. Seuss' Sleep Book" you know about the machine that sits in a plexi-glass dome half-way between Reno and Rome which listens and looks into every one's home. You know that whenever it sees a new sleeper go flop it jiggles and lets a new biggle ball drop. Some chap counts them up as they plup in a cup and that's how they know who is down and who's up. Well, I feel a bit like the Internet serves that purpose for you all. It listens and looks into my home, and people all across the country can tell which Eby members are currently down and who's up. I imagine dinner conversations which go something like this:

"So, did you read up on the Eby's today?"

"Yep, one got up, but two more are down today."

"Again? That's incredible! How long can this possibly go on?"

"I don't know. But at least it give us something to talk about at dinner. That poor mom deserves a medal!"

Oh, sorry, just daydreaming there. Anyway, so now you know today's current score: "Hannah is up, Elijah and Naomi are down, and Matt, Toby, Emma, and I are somewhere in between." Tune in next time to find out what flavor virus Hannah catches tomorrow.

And a Side of Strep

2012-02-06T15:58:00.001-05:00

In the last week we have cultured an impressive collection of illnesses in the Eby House Petri Dish: pink eye, sore throats, runny noses, coughs, fevers, and vomiting. But now Toby has come down with the all-time winner: strep throat.

He'd been walking around the house with green ooze dripping from his nose for two weeks, so when he came down with a high fever Friday afternoon I figured he might have a sinus or ear infection. I would have taken him to the doctor sooner, but it was Friday afternoon, and I didn't want to be the paranoid mom who rushes her kids to the ER for every fever. I talked myself back down to earth: it could just be a viral fever, or a little infection his body will handle soon on it's own. It won't hurt to wait until Monday.

Toby was miserable Friday evening and Saturday. He coughed incessantly, lost his appetite, and walked around with dark, puffy, blank eyes. His fever went up and down between 100 and 103, sometimes responding and lowering with Tylenol and sometimes not. He put himself to bed early, but wouldn't drink the cup of milk he requested.

Sunday morning, however, he appeared so much improved with no fever and bright eyes again that we figured he'd turned the corner on some nasty virus and it wouldn't hurt to take him to church with us. We kept him out of the nursery just to be safe. But by the late afternoon the dark, bleary eyes returned, then the refusing to drink, then the horrific coughing fits. His breathing became rapid, his fever spiked up to 103 and refused to come down with Tylenol, and he was becoming dehydrated. He cried and cried but wouldn't tell me why. "I just feel so sad," he said. I called the on-call nurse and she advised us to head to the ER.

I've made a lot of ER runs before and I have decided that the three hours during the Super Bowl are the best hours to head to the ER out of the entire year. The place was deserted, except for two couples glued to the big-screen TV in the waiting area. We walked in, signed two forms and went straight back to triage. The triage nurse wanted to take Toby's temperature in his mouth. This was a new experience for Toby (I always use the armpit), and he wasn't in the mood to cooperate. He held his mouth open and still got a reading of 103 degrees. His oxygen saturation was also down to 95%. The nurse led us straight back to a room where Toby sat on my lap listening to me read Curious George stories. As we went I heard another nurse call one of the ladies from the waiting room. Reluctant to leave her big-screen entertainment during the last quarter of the game she asked, "Do they have TVs back there?" When the nurse assured her that they did, she responded, "Oh good, otherwise I'd be staying right here!"

The doctors exam of Toby didn't take long: one look in his throat and she said, "Whoa! He's got strep throat! That looks pretty bad. Yep, his lymph nodes are swollen too." I asked if she was going to do a rapid strep test, but she said she didn't need to with a throat that looked like that. I asked about a chest x-ray to look for pneumonia, and she said it would be pointless since the antibiotic to treat the pneumonia would be the same for the strep. So we were in and out of the ER in less than an hour--an all-time record for us.

"Toby," I asked, when she had left the room, "does your throat hurt you?"

"Um," Toby thought, "no. It doesn't." Right, he won't eat or drink, his throat is pocked with pus and blood, and he's sick as a dog, but he's not going to call it painful. That kid is made of nails. After a minute he did concede weekly, "Mommy, I'm a little bit sick. Put me in bed."

He cried as we waited at the pharmacy for his antibiotic and gladly snuggled up in bed once we got home. Today he is feeling brighter, drinking some water, and he ate a little rice pudding. He still refused his cup of milk before nap, but happily greeted his pillow and blanket. His fever is around 100 and disappears with Tylenol now. Hopefully he'll be more himself by tomorrow.

What am I doing today? Washing everything I can in hot water, wiping everything I can with Lysol, passing out blops of hand sanitizer like it's candy, reminding Toby to cover his mouth every time he coughs (which is about every 10 seconds), and lecturing the girls about the dangers of touching Toby's sippy cup. I also sent out an apology e-mail to the other families in our church with small children warning them that they were exposed to strep yesterday. Yes, I feel guilty, but I really didn't know it was that bad. Matt was supposed to have the day off of work today (after logging 56 hours last week), but he was called in to work again today. Feeling a little disappointed as he got dressed, I asked him where he'd really rather be today: at work or at home disinfecting the entire house and caring for sick kids. "Well, I guess I have less of a chance of getting sick at work," he agreed. That's right Matt: run, save yourself.

On the bright side, a friend from church just dropped off some take-n-bake gluten free pizza for us (made in a place that's careful about cross-contamination), so I can cross two hours of dinner prep off of my "to-do" list. And little, Elijah, bless his sweet, smiling face, has sailed through all of these disease-laden seas without even a sniffle, one of those amazing benefits of breastfeeding. There's always something to be thankful for: pizza and a smiling baby happen to be two of my favorites.

Catching, Isn't It?

2012-02-01T08:56:00.001-05:00

I hate waking up to splattering noises. Of all the awful things to wake up to, splattering noises has to be one of the all-time worst, and that was my good morning wake-up call this morning.

Toby's been walking around for a week now with green ooze leaking from his nose and ears (he has ear tubes and they're doing what they're supposed to do: draining fluid that backs up to his ears). Matt's had a cough that he can't shake for three weeks now. So I thought things were bad when Emma came down with pink-eye two days ago. That evening Hannah had a stomach ache and a low fever. Last night Toby was running a low fever and Naomi had an awful headache I thought that might have had something to do with the five sprays of my perfume she doused herself with, but her headache persists today and is now accompanied by the infamous joint pain that sometimes still plagues her.

But all of that pales in comparison to the splatters. I heard them at 7:00am and lept from bed, which of course woke Elijah. I found Emma trying desperately to make her way up the stairs to tell me that she was throwing up, only she had trouble getting the words out in between blurps.

"Emma! Just stay right there! Don't move!" I ordered. After waking Matt to take care of Elijah I attempted, unsucessfully, to pick my way down the stairs without getting my feet wet. The route to the kitchen for the papertowels and disinfectant was like a mine field. Finally getting my supplies, I stripped Emma, who was an eerie shade of green, and put her in a warm bath while I scrubbed floors. I heard Naomi clomping down the stairs and shouted out a warning, but it was too late: another pair of slippers joined Emma's pajamas and the bathroom rug in the laundry.

The house is relatively clean now, but I feel like germs are on everything I touch: colds, fevers, stomach flu, pink-eye, and sinus infections threaten me on every doorknob and lightswitch. I am now turning over my computer to the kids so they can watch cartoons today. We don't own a TV and I rarely let my kids watch cartoons, but some days you make exceptions, and today is an exceptional day. While the children are in a cartoon-induced coma I will be waging war on germs, not that it will stop their spread, but it will make me feel better. Come by and visit us...if you dare.

All According to Plan...Just Not Mine

2012-01-30T15:54:00.000-05:00

I woke up this morning with one thing topping my priority list: laundry. Both hampers are overflowing and Hannah had to wear Emma's pants because all of hers are dirty. But that was fine with me, because I had nothing else to do. Then the day started.

Emma came down from bed with her left eye completely crusted shut. She couldn't even open it. I had to wash it with a warm, wet, rag to loosen the crusty matter and peel her eyelid free again. Inside was a bright pink eye--no surprise there, but hey, I can be flexible. I made an appointment with the pediatrician for later this morning. Then, putting Emma's glasses on I noticed that one arm was severely bent, a nose piece was missing, and a screw had disappeared. So I figured we'd swing by the eye doctor's office after the pediatrician.

The pediatrician's appointment was at 11:15. We got to the eye doctor about noon. The lady there commented, "Boy, Emma did you have a fun day yesterday?!" when she saw the glasses. Toby ran up and down the handicap ramp as fast as he could making car noises while the repairs were made. When we drove by the pharmacy for the antibiotic eye drops Elijah was out of patience with his car seat and screamed as we sat in the drive-through line, then all the way home. Emma attempted to calm him by singing, "If you're happy and you know it." Which I found simultaneously highly annoying and hilariously amusing. After calming Elijah at home, making lunch, and putting Elijah and Toby down for naps I felt triumphant. I hadn't planned any of that, but we survived. The only obstacle between me and a successful day now was five loads of laundry.

I sat down to tie up a few loose ends in this week's schedule. Only a few minutes later I heard Naomi yell out, "Emma! Why did you leave your glasses on the floor?!?! I just stepped on them!"

Can I cry now? Maybe I should just laugh, but I feel more like crying. Emma's glasses are mangled! Both arms are bent, the lenses are popping out, and I don't know if they'll be able to fix them this time. Seriously? We went nine months with only one minor repair before and Emma manages to mangle her glasses twice in 24 hours? Am I supposed to learn something from this? OK, I just wrote "string to tie Emma's glasses around her neck" on my shopping list, but beyond that, Lord, is there a reason for this madness?

The horrible, sickening twist is that if I want Emma's glasses fixed today (which I do, she has preschool tomorrow and she needs them to see), I will now have to wake up two sleeping children to load them back in the van and drive back to the eye doctor's before they close at 4:30. Unless I take drastic action, poor innocent Matt will then come home to a dinner of Rice Chex with rice milk, no clean clothes, and an angry wife. I know this is not fair to him. That's why I'm venting here...then calling my mom. Pray that the pressure is released before Matt makes it home, for his sake.

An Eye for an Eye

2012-01-28T13:04:00.000-05:00

"Is that a fight upstairs?" Matt called to me as I cleared the lunch dishes today.

"I'll go check," Naomi volunteered, running up the stairs. She returned a moment later to report, "Toby hit Emma."

I called the acused in for questioning and he didn't deny his guilt, so I probed further, "And why did you hit her, Toby?"

"Because she hit me," he replied.

"Well, why did she hit you?"

"Because I was pushing her."

"And why were you pushing her?" I pressed growing more confused.

"Because she hit me."

Fearing we were going in circles I gave up on the interrogation and simply doled out the consequences for hitting--no matter the cause. I doubt either of them remembers what started the fight anyway. The problem with "An eye for an eye" is that no child would make it to adulthood without being blind.

Elijah Lie

2012-01-25T21:50:00.002-05:00

This is a poem written entirely by seven-year-old Naomi to her seven-week-old baby brother. She wrote this for journal yesterday.

Elijah's Poem

Elijah lie
Don't you cry
You don't need to yelp for help
Be happy, and not sappy
Be glad, not sad

Mama's home
So do be calm
It's okay
Mama's on the way
Don't keep awake to play
This whole long day

Please take a nap
And don't play with that little flap
Remember don't be sappy
But be very happy

On Toby's Farm

2012-01-17T15:52:00.000-05:00

"I have to work on my farm," Toby informed me yesterday as he watched me slice potatoes for french fries.

"Oh really?" I probed, "What do you need to do there?"

"I have to feed the cows, and the pigs, and the sheeps," he answered. "And there's a bad, bad monster there. He wrestles the horses and the pigs! I have to catch him."

Toby paused here, so I pressed him again, "A bad, bad monster? What will you do with him when you catch him?"

"I'll throw him in the potty!" Toby growled emphatically, "and kill him! He's not gonna be alive anymore!"

"Oh," I said, because, well, what else can one say to death by drowning in sewage? It's a harsh penalty, but he was a bad, bad monster. I decided to move the conversation along. "So what else do you need to do on your farm?"

"And the chickens need some eggs," Toby replied. "I have to give them eggs from the egg feeder, and they have to pay $1.00. And the pigs need pickles."

"I see. Do you grow any plants on your farm?"

"Just green ones. And purple."

Then the potatoes were sliced and seasoned, and apparently the farm work was done, because Toby jumped down from his chair and ran off to find an innocent sister to torture.

Full Hands, Full Heart

2012-01-11T17:21:00.000-05:00

Today began yesterday. Some days I have to start the day before or I'll never fit in everything that needs to be done in 24 hours. Yesterday I made sure to catch up on laundry and cleaning, and to cook an extra big dinner, because I knew there wouldn't be time or energy for any of that today. In the evening I re-stocked two diaper bags, packed Naomi's medical binder, a picnic lunch, and a few other essentials, and set up the juice cups and breakfast bowls for the morning. What was this major undertaking that would happen tomorrow? A routine doctor's appointment. But, being a 90 minute drive away with five small children, that pretty much equals the preparation and energy required to climb Mount Everest.

Soon after having Naomi I learned that a small child can cause myriad unforeseen delays, and in order to be on time anywhere I should plan a little extra time into my schedule, just in case. Now, with five small children the number of possible combinations of unforeseeable delays has increased exponentially, so I've learned to plan way, way, way more time into my schedule because, well, something strange will happen, it just will, and it will probably bring friends with it.

The appointment was scheduled for 11:00am. My alarm went off 7:00am and the race began. The alarm, of course, woke Elijah so there went the first thirty minutes of my morning to nursing, diaper changing, and resettling the baby. Then dressing, combing, and feeding everyone. Then nursing Elijah again, and, of course, he had a bowel movement that erupted up the back of his diaper and all over his outfit. So, I called out orders, "OK, everyone put your shoes on! Naomi, help Toby with his coat, please! Has everyone gone potty?..." while I scrubbed neon-yellow poop from Elijah's onesie and re-dressed him. After being stripped bare, Elijah was mad as a hornet when I strapped him in his car seat, and he made sure everyone in the van knew it for the first 20 minutes of our drive. But we left on time, which means that we left the house at 9:00am for a drive that only takes 1 1/2 hours. That left half an hour to unload the passengers and luggage at the hospital, take everyone potty, and nurse Elijah a little before the 11:00 appointment. Step one of my journey complete.

When Elijah was born I had wanted to arrange the kids' seats in the van so that Naomi was beside him to help calm him, but with our combination of seat belts and car seats only Emma could sit beside Elijah. She tried as hard as she could to console him as he screamed this morning, shoving the pacifier in his mouth and belting out "Hark the Herald Angels Sing" over his screams. I hated to discourage her so, when I could bear it no longer, I said, "Wow, thanks, Emma. You are such a good big sister, let's listen and see if he calms down now." We listened then, and within a few minutes he did calm down.

That's always such a magical time--all five kids are strapped down; all is calm, all is quiet. For the next hour I felt almost like a real person again. I could listen to the radio, enjoy the scenery, and ponder things deeper than how to zip up a coat and scrub poop at the same time. I don't even care much what's on the radio: Chuck Swindoll, David Jeremiah, or some new punk Christian band--if you're over the age of seven, have an intelligent sounding vocabulary, and demand nothing from me, you're music to my ears.

We arrived at the hospital a little early, 10:20am. Elijah woke up as soon as the van stopped moving and picked up his protest right where he had left it, somewhere in the middle of "waaaaaaahhhhhhh!" I shoved the diaper bags and the cooler in the double stroller with Toby and Elijah, had the girls hang on to the sides of the stroller, locked the van, and away we went. Elijah screamed through the parking garage, the elevator, the sky walk, and the halls as I called out, "OK, Naomi run ahead and press that handicap-sign button to open the doors! Hannah, run ahead of her and press the up button on the elevator. No, the UP button! OK, Emma, can you press the number two in the elevator? No TWO! OK, let me help you. Naomi, open the bathroom door now. Wider! Honey, I have a double stroller here, you're going to have to open it all the way. Everybody in now! Pick a stall and go potty. Naomi, can you help Toby while I change Elijah?" One lady walked into the bathroom, saw my crew, and turned around and walked right back out!

Amazingly, we made it to the appointment right at 11:00am. Awesome. Unfortunately, we spent the next 40 minutes in an 8' x 6' room waiting for the doctor. When all the books had been read, all my patience had been spent, and Elijah was ready to nurse again, the doctor arrived. We yelled over Elijah's cries as we discussed Naomi's last urine collection. There was still the same amount of protein in her urine, so the doctor wanted to switch her medication and increase the dose, then re-check her urine in 4 weeks. He wrote the prescription, listened to Naomi's chest, pressed on her belly, and was done. With four hours and forty minutes of preparation behind me, our five-minute appointment was over. Now there only lay ahead of me lunch, one bathroom break, a 90 minute car trip, and a stop at the pharmacy before I was home. Piece of cake.

I drew a lot of attention as I wore Elijah in the baby carrier and doled out lunch to my kids in the hospital atrium. Over and over strangers stopped to comment, "Wow, you sure have your hands full!" and one kind man even said, "You're doing a good job there, though." The lady eating at the next table called over, "That reminds me of me. I had five kids too--all teenagers now. I sure miss those days!" Ah, yes, the rose colored glasses of retrospect. I'm sure I'll miss these years too, fifteen year from now. Then all the way to the bathroom, in the bathroom, and all the way back stranger after stranger said, "You sure have your hands full!" just as if they were the first person to ever make that observation. I just smiled and quipped, "yes I do, but my heart is full too."

Just the time I was starting to get a little annoyed Hannah made my day by remarking loudly, "Why does every person in this hospital keep saying that to us?!"

I laughed and replied, "I guess it's because it's true."

I had my hands full all the way to the parking garage, but then I had another blissful hour of silence and deep pondering on the drive home, and in that hour, when my head cleared and my hands stopped, my heart really was full.

Tomorrow there's a snowstorm rolling in and Emma needs to see her eye doctor--a 45 minute drive away. Leftovers tonight, then resting up for round two tomorrow.

Look At Me Now

2012-01-10T14:49:00.000-05:00

This morning Elijah was having trouble settling down for a nap, I was trying to ingest some caffeine while calming him, and Toby asked me to read him a book. He used his big brown puppy dog eyes that said, "You know I've been neglected lately while you focus all your attention on Elijah." So I found myself bouncing up and down on a large red exercise ball with Elijah strapped in the baby carrier on my front and Toby sitting beside me in a chair. I held "The Cat in the Hat" in my right hand and alternately read a few sentences, then sipped from the coffee mug in my left hand (and it is tricky to sip coffee while bouncing up and down--I'm not allowed to break the rhythm or Elijah cries again).

When I got to the page where the Cat lists all the things he can hold up while bouncing on a ball I had to laugh. I was almost as talented as him. So I read to Toby:

Look at me.
Look at me.
Look at me now.
It is fun to have fun, but you have to know how.
I can hold up a baby and a white coffee cup.
I can read from a book as I bounce down and up!

That caught even Naomi and Hannah's attention as they folded laundry. They laughed and I laughed. Tomorrow I will hold up the fish on a rake and fan with my tail, come by and be impressed!

A Decade

2012-01-05T12:55:00.000-05:00

Ten years ago today I woke early in a hotel room with my college girlfriends. We smiled and joked and felt the rising excitement as my roommate carefully curled and pinned my waist-length hair in perfect ringlets. We met my family in the lobby and drove in the twinkling white flurries to a majestic old cathedral (now turned Presbyterian church) in the heart of Chicago--the same church where a young man and I had spent our college days wrestling with the deep issues of faith. I put on a simple white dress and a friend pinned on a veil that I had carefully hand-stitched during long phone conversations in my dorm room.

Ten years ago I married my best friend who had challenged and inspired me when most other boys seemed superficial and dull. We packed our few belongings and headed to a Seminary on the East Coast. We had no idea what the next ten years would bring our way: deep peace and joy, close friendship and warmth, tragic loss and mounting stress, distance, bitterness and resentment, reconciliation, refreshment, babies and more babies, disease, doctors and more doctors, tearful prayers and astonishing answers, and the unmistakable hand of providence through it all.

How do you summarize ten years? Is it the events? The emotions? The growth we've experienced? It's even more complicated on a blog, since I'm not exactly sure who I'm summarizing for. I'd sum it up differently for my family, a stranger, or my long-lost friend. But however I put it down it will be inadequate, some things you just have to experience to understand.

2002: Matt and I were married, moved to the North Shore of Boston and continued Matt's seminary education. I worked as a Nanny for two families that year. We helped lead the youth group at a Reformed Baptist church. We spent the year visiting the beaches of the Atlantic Ocean, taking long walks through hill country, and chasing each other through the haunted halls of Matt's security job in an old convent turned advertising agency. One of the boys I nannied for had Autism and it was here that I first learned about therapies for this disorder and gained the skill of gluten-free, casein-free cooking.

2003: We survived a colossal New England winter. Matt was accepted into the tuition-paid PhD program at Wheaton college in Illinois. We bought a little condo in a half-way safe neighborhood and learned a lot about cultural diversity there. I miscarried our first two babies. One night, on the balcony of our condo, I was struck with the deep conviction that children are gifts from God, and I prayed, much like Old Testament Hannah, that if God granted me children I would surrender my plans for them and graciously accept his plan for them. I felt deeply convicted then that suffering would follow. Several weeks later we learned that another child had been granted us. This baby stayed with our family.

2004: In January we headed to our 20 week ultrasound like any naive first-time parents. The technician was friendly at first but grew more distant and less chatty as the exam went on. She hardly seemed happy when she told us we were having a little girl. I figured she'd had a long day. One week later our OB told us bluntly that our little girl's kidneys were too "echogenic" or bright on the ultrasound. She had no idea what this meant and advised we see a specialist. We declined, being confident that everything was fine and knowing we didn't have the money for needless doctor's visits. It is better that we didn't go. I wasn't mature enough then to handle the diagnosis that would come.

In March I was put on complete bed rest for preterm contractions. I spent six weeks reading, crocheting, and crying at every episode of Extreme Makeover: Home Edition. On May 17th, just over three weeks before I was due, Naomi Katherine Eby was born. Her club feet immediately dampened the mood, and it wasn't long before they observed her distended abdomen and ordered an ultrasound and blood work. The next day Naomi was placed in intensive care as her kidney function declined and the doctors began to discuss the possibility of putting Naomi on dialysis. We cried and prayed and sat at her little plastic bassinet in that bright, beeping room as many hours as we could. Everyone we knew prayed, and by her fifth day of life Naomi's kidney function had stabilized at impaired, but sufficient levels. She came home on Matt's 26th birthday.

Though a relief and a joy to bring her home I soon learned the stress of a special-needs baby. She needed routine blood draws, ultrasounds, nephrologist appointments, and orthopedist appointments, alongside the normal well-baby visits. But far more stressful was her unique personality. She screamed just about night and day, she never slept for more than 20 minutes at a stretch and woke in full-blown screams again. It took ages to settle her again. One day, after reading that a newborn should sleep 16-20 hours a day, I recorded Naomi's sleep patterns and found that her 10 and 20 minute naps only totaled about 6 hours out of 24! I used to dream about committing myself to an asylum just so I could sleep. I tried altering my diet. I tried "sleep training her" (Ha, Ha, Ha! She could cried for five hours at a stretch without falling asleep!) I only found a measure of rest when I gave in to putting her in bed beside me, wearing her around while I was awake, and nursing her most of her waking hours. We later learned that Naomi had a complete inability to concentrate her urine causing her to dehydrate quickly, hence the need to nurse constantly. She also soon gained a diagnosis of "sensory integration disorder" which basically means hypersensitivity to every stimuli and an inability to calm oneself. No kidding.

In December I began nannying for a family with a newborn little girl. I brought Naomi with me and the two girls grew up as friends the first three years of their lives.

2005: Naomi began having physical and occupational therapists visit our house weekly. She was hospitalized three days again in March, but soon after began to sleep through the night. Phew! In June, just after Naomi's first birthday, we learned that God had granted us another baby. Two separate geneticists told us that they didn't know what disease Naomi had, but it certainly wouldn't repeat itself with our other children. We were excited, but tension mounted. Naomi was still quite needy and Matt was supposed to be finishing up his dissertation within a year to graduate within three years. We learned then what happens when two people are pushed to the point that they have nothing left to give to the other: distance and bitterness.

2006: On March 6th Hannah Claire Eby arrived safe and healthy. Matt didn't get the dissertation finished to meet the optimal three year goal and opted to use a fourth year of full-time work to finish. I continued to nanny, now taking two kids with me and found support with other moms in our local church.

2007: In January we learned that a third baby was on the way. Matt was still unable to finish the dissertation and bills were mounting. We would have to find full-time work to support the family and try to finish a dissertation on the side, long-distance from the college. On May 17th, Naomi's third birthday, my grandmother passed away, and Matt and I sat stunned at another 20 week ultrasound. Our third little girl's kidneys were echogenic. This time we opted to see the specialist.

In June we were offered positions as dorm parents and bible teacher at a small christian boarding school in Iowa. Just before we moved in July the baby showed fluid collecting in her abdomen and the pregnancy was watched every few days with ultrasounds. We spent July and August settling into our new house, driving the hour-long trip to the University of Iowa for monitoring and tests, and meeting our new family: seven teenage boys who lived in the dormitory attached to our house.

On September 9th labor was induced almost a full month early because the baby was in clear distress. Emma Peace Eby arrived and was whisked away to intensive care. She spent a total of eight days there before being sent home. She was a peaceful baby and we began to love the busy, full days of boarding school life. In October we finally received a diagnosis for Naomi and Emma's kidney disease. It was scary and dark: Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), a disease that the information on the Internet mostly described as a death sentence. Matt was able to accomplish absolutely nothing towards the dissertation that year.

2008: Matt, Emma, and I flew to Philadelphia in April for a meeting of and ARPKD/CHF support group and learned more accurate information about the disease. We were also accepted into a study on the disease at the National Institutes of Health (NIH) in Maryland. NIH flew our entire family out to Maryland for a week-long research trip in June. The girls were poked and scanned and tested with every possible test that week. At the end we were sat down in a conference room with doctors and nurses who told us that our girls had a mild version of ARPKD/CHF, that their condition would deteriorate slowly, and that transplant and surgeries could be many years away. We were advised not to try to have more children unless we wanted to do In-Vitro Fertilization with genetic screening to implant only healthy embryos and destroy the diseased ones. They looked at us like we were crazy when we said we could not ethically do that.

Two days after returning from NIH I began to feel nauseous. Baby number 4 was already on the way. I dreaded the next 20 week ultrasound. Matt dedicated the entire summer to his dissertation so I took the kids on vacations by myself that year. In August our dormitory filled with seven teenage girls and the busy year began. In October, at the dreaded ultrasound, the baby was found to have only one normal kidney. Subsequent specialist ultrasounds showed a small "right" kidney attached to the bottom of the left, but no signs of polycystic kidney disease.

2009: February 17th Tobiah Matthew Eby made his debut, healthy and strong with one good kidney. With the down-turned economy enrollment dropped, our dormitory was closed, and we knew major staff-cuts would be made at the boarding school. Matt was granted only one more year to finish the dissertation. When other employment couldn't be found we made plans to move in with Matt's parents and make a last push to finish the PhD. We moved in July. Naomi began kindergarten at the nearby public school, and we settled into a new church home and routine.

2010: For months Matt had done nothing but eat, sleep, and breathe dissertation. In February, two days before Toby's first birthday he turned in a completed draft of a 100,000 word masterpiece. In April we drove to his oral defense, which by all accounts he nailed. Students congratulated Matt in the hallway and said it was the best defense they had ever seen. Matt called me in good spirits and I drove to pick him up with the kids. But the committee was solemn when Matt was called in. The dissertation was not passed, the PhD was not granted. I will not speculate here as to why. Matt was never given a straight answer. He had made mistakes in the process, the draft was not perfect, but it was almost admitted that he never would have been able to please the committee with the topic he chose. It was too controversial, too volatile. Perhaps the fault lay with those who approved his topic six years earlier. Whatever the reason, it was not to be. Matt was granted a second masters degree instead.

With the economy plummeting a PhD was practically useless anyway. There were no jobs in that field. There were no jobs in any field. Matt put out applications and attended interviews in all fields of work, but nothing materialized. Tensions grew with Matt's family, as they will when any two families live on top of each other for over a year. I began blogging as an outlet, and a way to focus on the positive things in my life that summer. Naomi and Hannah were diagnosed with Celiac Disease and I began gluten-free cooking. By Christmas things were desperate.

2011: A neighbor helped Matt land a factory job. A friend from Matt's parents' church showed us a rental house. Our church family helped us fix it up and move in. I began homeschooling the girls. In March we learned that baby number five was on the way. In April Matt got a job as a phlebotomist, which was slightly more lucrative and a lot more secure.

It was a healing summer, in our own house again, with Matt home every evening--no school work hanging over his head. We went for walks again, spent evenings talking again, began to live again. In September Matt was hired by the American Red Cross, and in December Elijah Gabriel Eby arrived, healthy and whole.

2012: I truly have no idea what will fill this

year, but I look forward to finding out.

Ten years ago I married my best friend, and we walked a difficult road of blessing. Remembering those years here (however briefly and inadequately) is my way of celebrating them. May we walk together many more years.

Errands and Shoplifting

2012-01-04T17:41:00.000-05:00

I lay in bed last night thinking through the next day's schedule and realized I had no choice but to take all five tots to the grocery store with me today. The list had filled an entire notebook page, the cupboards were looking bald, and Matt was working three long days in a row. I couldn't leave the kids with him, they would just have to come with me. That was a daunting enough thought, but several hours later as I lay awake feeding Elijah I realized that it was also time to drop by the hospital for Naomi's next 24 hour urine collection kit. Two stops with five kids, wonderful.

It took me all morning just to get everyone dressed, combed, and fed; then organize the shopping list by aisle, and pack the diaper bags (yes, I need two now). After lunch we piled out the door in the usual shifts. Naomi stayed inside with Elijah, rocking his car seat to keep him happy, while I strapped Hannah, Toby, and Emma into the van. Then I strapped in the last two; double checked that I had 5 kids, two diaper bags, a cell phone, a wallet, and a double stroller; and pulled out of the driveway. Halfway to the hospital I realized I'd forgotten the baby carrier. Rats. I'd have to swing back by the house on the way to the grocery store to pick that up, otherwise I'd be sunk if Elijah protested the stroller while I shopped.

At the hospital we piled out in reverse order and loaded Toby and Elijah into the double stroller. We marched in the revolving door (and whoever invented those things did not have in mind a mother with five children and a double stroller fitting through there at the same time), and greeted our favorite registration desk lady who knows most of the kids by name now. After picking up our kit at the lab and visiting the new birds in the aviary, we marched back outside and piled back into the van: Elijah, Hannah, Toby, Emma, Naomi: check, check, check, check, check. I wasn't too thrilled when I hopped in the driver's seat only to have to hop out again because Hannah (in the opposite corner of the van) needed help with her seat belt. But, (don't tell Hannah) I was secretly very glad I had because I discovered the double stroller still parked behind the van! OK, so I need a little more practice at this.

One quick stop home followed, then off to the grocery store we went. After unloading the passengers at the store, we picked up a prescription at the pharmacy, then Naomi pushed the boys in the stroller while I pushed the cart and tried to fill it as quickly as possible because I knew the clock was ticking until Elijah's next feeding. Ten minutes into the trip we had to take an emergency potty break in which we occupied every stall in the women's bathroom. Back out on the floor I began grabbing groceries faster than ever. Toby was extremely restless. He threw his weight back and forth in the stroller, leaned over the side and tried to stick his fingers in the wheels, and lunged for any groceries he could claw off the shelves. Emma had to wrestle a can of tomato paste away from him once. Naomi proved to be an expert stroller driver, and we soon landed in the check-out aisle with an overflowing grocery cart and a baby that was still sleeping. Way to go mom!

Leaving the store was a little more tricky now that our groceries occupied two full carts. I pushed one cart and pulled one cart, behind my carts traipsed Hannah and Emma, and behind them came Naomi with the double stroller. Strangers stopped to stare at our 20 foot train as we headed into a busy parking lot. I breathed a huge sigh of relief as we all pulled up to the van, and for a moment I celebrated the accomplishment...until I lifted Toby from the stroller. Under my son's bottom lay six rolls of Mentos candy! So, after loading 5 kids, two bags, a double stroller, and mountain of groceries back into the van I parked my van illegally in the fire lane, ran into the store, dropped the loot in the hands of the first uniformed lady I could find, and explained, "I think my two-year-old shoplifted these, sorry," before I dashed back out the door to my van. All five kids were still fine and no one had ticketed my van yet, but Elijah was waking up.

I raced home while Elijah made small stirring and fussing noises. Just as I pulled up to my house he began to scream. Out came the crew of five and into the house we flew. I stationed Emma to rock Elijah's car seat and give him a pacifier while Naomi, Hannah, and I dashed back and forth unloading groceries from the van. Elijah emphatically denied my gesture of kindness, and Toby attempted to block our entry to the house with all the skill of a football hero.

Finally the groceries were in, the van was locked, the house was locked, and I collapsed into a comfy seat where I fed Elijah and was served a banana, a string cheese, and a glass of water by my little angel Hannah while Naomi put the groceries away. Next week we will survive without groceries until Matt has an evening at home. I don't think I'll be up to repeating today's display of bravery for a few more weeks.

Notebook Highlights from December

2012-01-01T17:00:00.000-05:00

It's frustrating, but I just can't type on a computer with a baby in my arms, and that is where little bitty Elijah wants to be...now and forever. The only way I can even get the cooking and cleaning done is by wearing him in a sling or carrier while I do them, or by putting him in the bouncy seat and begging his sisters to bounce it for me, though this usually only buys me a few minutes. Naomi and Hannah are also growing a little less enchanted and a little more annoyed at having to stop their play to care for their brother, but alas, if they want a hot meal, they have to pitch in sometimes. I tell them often how grateful I am and we make jokes to Elijah and try to convince him that he really wouldn't like to take a shower, but I know they still get tired of it. I worry that they will resent him, but last night as we talked over everything God had given us in 2011, they both chose to thank God for Elijah, and I breathed a little sigh of relief. Phew! They still like him!

Blog posts roll around in my head and compose themselves throughout the day sometimes, but then never make it to the computer. Finally, last week I did jot down some funny happenings in a notebook, and I am attempting to take a few blessed minutes of peace to put them down here. Let's hope Elijah stays asleep. Here goes:

*No matter how many times Hannah and Emma play their new favorite game it always cracks me up. What is this game? It's called: "Hurry to the hospital because Emma's water broke!" Emma shoves a baby doll in her shirt, yells, "My wah-er guh bow! (My water just broke!)" Then Hannah runs and yells in a panic as they race to the hospital. A few seconds later they emerge with an adorable new baby and the game is over. I really didn't run and yell like that when my water broke...really. Where do they get this stuff?

*When I told Toby that he needed to pick up his toys he looked at me with stone-cold defiance and yelled, "I'm NOT..." but seeing my raised eyebrow and knowing it translated to something like "Are you sure you really want to say that to Mommy?" he decided to switch tracks and end the sentence with the words, "...six, I'm FIVE!" Which was, in my estimation, a brilliant save for a two-year old, even if it was entirely off subject and altogether untrue.

*As I bounced up and down on our big red exercise ball with Elijah in my arms, I sang "She'll Be Comin' 'round the Mountain" in the hopes of calming his cries. Hannah listened, then laughed and admitted to me, "When I was little I thought 'She'll be drivin' six white horses' meant she would be driving a car with six white horses inside it, but they wouldn't all fit in there would they?" No, dear Hannah now that you're old and wise I'm glad you've realized six horses won't fit inside a car.

*My grandma sent out a box of gifts for my children, which we opened last week. Each present was wrapped neatly and packed in packing peanuts inside the large brown package. The brown box and packing peanuts lived in our school room a few days before I decided to throw them out. Emma began sobbing frantically as I tossed the peanuts in the garbage and yelled to her sisters for help, "Mommy's throwing away our craft things that grandma sent!"

That's all for now, but I intend to keep more notes, so look for future "Notebook Highlights" posts from me for more Eby silliness.

Lost

2011-12-26T16:26:00.000-05:00

Matt had last Friday off from work, and as much fun as we had dragging five kids to three different stores together, we decided we needed something more fun that night. After an early gf pancake dinner we piled all five kids in the car once more and drove half an hour to a nearby town that had a fantastic lights display in the town square.

The kids oohed and aahed and we drove into a Christmas wonderland of lights--except for Toby who was sound asleep and Elijah who was ready to eat. Matt decided to take the three girls out to walk among the lighted displays while I sat in the van and nursed Elijah. I watched their shadowy figures disappear into a crowd. For awhile longer I could discern where they were from the little red flashes of Emma's light-up shoes, then I lost even that hint. The van grew colder as I sat in the darkness. After ten minutes or so I turned it back on and strained my eyes for a hint of my family's whereabouts. I began to imagine scary scenarios that could be keeping them away so long--it's a little curse of my overly-imaginative mind. I thought about calling Matt's cell phone to let him know that Elijah was almost done eating, but then remembered that the phone in my pocket was dead.

I studied the masses of people again and finally caught a faint flicker of red lights near the feet of a small figure a full block away. Two more little figures walked in front of her with an adult in the lead. OK, I thought, at least I know where they are, and they're all together. I watched the crowd in front of me again, knowing it would be a few minutes before Matt and the girls made their way back. Suddenly a child in a dark coat dashed alone in front of a display of carolers and disappeared behind a pine tree far to my right. "That looked like Hannah," I immediately thought, but I dismissed that thought because I was sure I had just seen all three girls with Matt. In the span of about 10 seconds the argument continued within me, "But the kid was wearing red pants, I think...was Hannah wearing her new red pajama pants tonight? And it carried something that could have been Hannah's blanket...did Hannah bring her blanket with her?" I couldn't remember for sure, but I decided I better get out and go check on the child, just to be be sure.

I detached Elijah and slung him over my shoulder (still wearing his snowsuit), just as the child came racing out from behind the pine tree and back towards the carolers. It was Hannah! I fumbled with my locked door, then jumped out of the van. She was running away from me and screaming frantically at the top of her lungs, "Mommmmyyyyy!!!! Mommmmmyyyyyyy!!!!!" Crowds of strangers were staring at her, bewildered. I ran towards her (little Elijah bouncing on my shoulder) and called her name. It must have looked like a scene to end a sappy movie as we ran towards each other and hugged.

Poor Hannah was shaking and sobbing, "I couldn't find Daddy! He was just gone! I was trying to find you in the van!" I calmed her down, then realized my predicament: Toby was alone in a running van half a block back and Matt was somewhere in a crowd half a block ahead, surely frantically trying to find Hannah. I wished I had remembered to charge my cell phone. I grabbed Hannah's hand and half drug her along the sidewalk towards the place where I had last seen Matt, glancing back every few seconds towards our tiny van. Within a minute I heard Matt yelling Hannah's name. He was relieved to see her with me, but I was surprised that neither Naomi or Emma was with him.

"I told them to stay right where they were," Matt said, "because I knew I couldn't cover ground quickly enough to find Hannah with them following." Looking ahead down the sidewalk I saw the girls standing stone-still under a streetlight.

"OK, take Hannah then and go get them," I said, "I have to run back to the van because Toby's alone." Within five minutes we were all seven safely back in our van, but it took much longer for my heart to stop pounding. On the way home we sorted out what had happened.

Matt was leading the three girls from one display to another when Hannah's mind had wandered from the task of following him. She remembers hearing him say that they were going to turn towards a different display, but can't exactly remember why she kept walking straight. "I was just following the lights," she admitted quietly. When she realized she was separated from Matt and had no idea where he was she ran a full block back to where she remembered the van being parked to try to find me, but she ran to the wrong parking lot. That was when I had first seen her. Failing to find me there, she began screaming, but I couldn't hear her over the noise of the engine running and the heat blowing. Meanwhile Matt had only had his eyes off the girls for fifteen seconds or so, but by the time he realized she was missing, she had already bolted for the other end of the park.

We had a good talk about safety and what to do if you're lost on the way home. Hannah was still a little shaken when we tucked her in bed. I have a feeling she'll be watching her parents a little more closely the next time we leave the house together.

Babies Don't Keep

2011-12-22T13:45:00.000-05:00

I wish I had more time to blog. So much is happening at our house, but I guess that's exactly the reason why none of it is being recorded here. Back in the days when only one funny thing happened each day I had plenty of time to share it with the world, but now, with diaper changes and feedings and rocking filling every spare moment, there's little time to preserve those memories here. My camera has had to do most of the memory preserving for now.

Elijah is gaining weight and growing up quickly. He's also becoming more demanding. He knows who his mother is and he's not about to lose her. But, strangely enough, his constant demands don't bother me quite so much with him. I waited a long time (well, it seemed long to me) to have another little bundle to carry around in a sling and rock to sleep, and I want to enjoy it this time. The other kids have also helped to ease the burden on me. Hannah stands guard over Elijah's bouncy seat most of the time, bouncing it whenever he fusses. Naomi has also taken turns bouncing the seat, although she usually has an "Encyclopedia Brown" book in the other hand. And, if the sisters are all occupied Toby is more than eager to take a turn bouncing the seat--the helpfulness of which is still to be determined.

I've been thinking more about the advice I'd like to give to a first-time mother, and feel the need to vent some of it here, that way if she doesn't want the advice she doesn't have to read it, but here it is, just in case she doesn't mind.

You wait so long for that little bundle, and for a few moments after he is born all is perfect and happy, then he wants to eat...and then he poops...and then he cries. You will repeat this cycle every half-hour for the next six months at least, and as much as you love the little darling it will get old and you will feel exhausted and frazzled at times, maybe most of the time. One night, when he cries for the 58th time, you will feel more like an angry grizzly bear awakened from winter hibernation than a loving mother eager to dote on her darling babe.

So here comes the advice part, and of course it is my opinion, and of course there will be thousands of loving mothers out there who have done it differently and who will disagree vehemently with me, but it's my blog...so there.

* I sleep with my babies beside me (gasp! horror of all horrors!) and they've all survived so far. In fact, I'm pretty sure our chances of team survival are greater this way, as it has preserved my health and sanity. If you have a FIRM queen sized mattress, you are not extremely obese, remove heavy blankets from your bed, keep your pillow clear of the baby's face, keep your baby on the side of the bed between yourself and safety rail (not next to your husband), and don't drink alcohol or abuse drugs you are almost certain NOT to smother your baby. The vast majority of infant deaths due to co-sleeping break one of these rules. Mothers naturally sleep in a more light stage of sleep and are in-tune with their baby's every breath and movement. I don't have the time to list my sources to support this, but you can reference Dr. Sear's "The Baby Book" for some support. The point is that babies know when they are near you and when they're not, and if your babies (like mine) won't have anything to do with being put down alone in a crib, put them down near you! If your babies (like mine) want to nurse every hour or so, lay them down where they can nurse while you sleep!

* Nursing doesn't come naturally to most mothers. Sorry. Please read books, take classes, practice latch-on technique with a baby doll, and know where you will turn for support if you have trouble. Does your hospital have a certified lactation consultant available? Is there a La Leche League meeting near you? Otherwise, when you run into trouble as many mothers do, you will be tempted to "supplement" with formula (which will jeopardize breastfeeding altogether) or give up completely. What are you going to do when you experience pain during breastfeeding, the baby doesn't seem to be getting enough milk, or someone tells you that supplementing with formula would be better so you can get some sleep? Have answers, be prepared, because you'll be too tired to find answers at 2:00am when your baby is screaming. One awesome book to read is "The Ultimate Breastfeeding Book of Answers." Buy it, read it, you'll be glad you did.

* To Buy:

--A boppy pillow: you're going to spend about 8 hours a day nursing for the first few months, get comfortable. Yes, it's worth the $20.

--Washable cotton nursing pads. If you have a generous milk supply, it will leak. The disposable kind are uncomfortable and trap moisture on already irritated skin.

--Large (30" X 40") cotton thermal (waffle weave) blankets for swaddling the baby in. Swaddling does not calm the baby down, but if you swaddle a screaming baby and then calm him down he will stay asleep or calm longer than if he were unswaddled. This keeps him feeling snug and keeps the startle reflex from flinging his hands into his face every time there is a loud noise. Oh, how I wish I had known this with Naomi! Learn how to really swaddle too: tight, tight, tight! There is a technique taught with pictures in "The Happiest Baby on the Block" that I love and it even impressed the nurses in the hospital when I showed them. This book is a good read anyway, I like the "Swaddle, Side, Swing, Shush, Suck" method of calming babies that it teaches.

--Buy two kinds of baby carriers: a sling, and a Baby Bjorn front carrier. Your baby will have times (or weeks) when he will scream like you placed him on a bed of nails every time he leaves your arms. You will lose your mind if you spend your day trying in futility to re-calm him and and lay him down again. Strap him to your body and continue your day. The sling allows the baby to ride in multiple positions, including all swaddled up and is easier to slip the baby out of when he's sleeping. I use a sling for quieter activities like going to church. The Baby Bjorn is ridiculously expensive, but it is indispensable to me. I don't like the cheap immitations. It allows baby to be so securely strapped in that you don't have to use one hand to steady him, like you should with a sling. I use this when trying to do real household chores like vacuum, laundry, dishwasher, walking outside, and other activities where the baby could conceivably slip out of the sling. This is also wonderfully stimulating to baby's growing brain. He will like to be close to you, feeling your every move, and listening to your words. He will grow up to be a child prodigy like my kids. Or at least you can hope.

--A bouncy seat that actually really bounces. I can't believe how many "bouncy seats" have toys and vibrators and easy-fold features, but don't actually freely bounce up and down. If it doesn't bounce easily when you apply light pressure with one finger, don't buy it, your baby will hate it. Get the plain old, ugly seat that can make your baby's head jiggle with the least effort on your part. When you're trying to eat dinner and bounce the fussy baby with your foot, you will be glad you did.

Above all, please remember that that little slobbering ball of discontented fury will only be so cute for a few weeks. Soon enough the fussing weeks will be replaced by the potty-training months and you will wish you had absorbed that soft baby smell a little deeper while you could. Count his toes, stroke his tiny little calves, kiss his downy hair, and repeat, "This too shall pass...all too soon."

I once saw this poem on the wall of a house filled with teenagers. I've always remembered the last line. Today I took the time to google it and was delighted to see that it was written for a fifth child. It really is a perspective that a mother of many babies has more so than most first-time mothers.

Song for a Fifth Child

by Ruth Hulburt Hamilton

Mother, oh Mother, come shake out your cloth,
Empty the dustpan, poison the moth,
Hang out the washing and butter the bread,
Sew on a button and make up a bed.
Where is the mother whose house is so shocking?
She’s up in the nursery, blissfully rocking.

Oh, I’ve grown shiftless as Little Boy Blue
(Lullaby, rockaby, lullaby loo).
Dishes are waiting and bills are past due
(Pat-a-cake, darling, and peek, peekaboo).
The shopping’s not done and there’s nothing for stew

And out in the yard there’s a hullabaloo
But I’m playing Kanga and this is my Roo.
Look! Aren’t his eyes the most wonderful hue?
(Lullaby, rockaby, lullaby loo).

The cleaning and scrubbing
will wait till tomorrow,
For children grow up,
as I’ve learned to my sorrow.
So quiet down, cobwebs.
Dust go to sleep.
I’m rocking my baby
and babies don’t keep.

Elijah--Week 1

2011-12-10T14:41:00.000-05:00

Little Elijah has now been a part of the family for one week. The most difficult twelve hours were last Saturday night when I got a flu shot in one arm and a Dtap in the other (to keep me from catching flu and whooping cough and passing them on to Elijah), Elijah began waking up to the world and making demands, and a virus that had been incubating for a few days surfaced that gave me horrific body aches and chills. I found myself alone in a quiet hospital room (Matt had gone home to help my mom put the other kids to bed), with a fussy baby who refused to be placed in that cold plastic crib, and feeling more achy and exhausted than I'd felt in years. Those were the longest 12 hours that night. Matt had been planning to take the kids to church in the morning and pick me up from the hospital that afternoon, but I called him at 7:30am and pleaded for him to rescue me earlier, which he did.

Thankfully, things have looked much brighter since I arrived at home. Elijah seemed to settle immediately once he was back in a house full of children's voices and the continual sounds of dishes and toys and slamming doors. He's never so relaxed as when I hold him close and start yelling at the girls to clean up their toys. Ahhhhh! Home sweet home.

Elijah has certainly been our easiest baby so far. I have been saying that with every baby since Naomi, and they just keep getting easier. I'm not sure if that is God's gracious way of giving us only what we can handle, or if the babies only seem easier because I am more experienced, or if they actually are calmer babies because I am a calmer mommy. Maybe some of all three, but whatever the reasons, it is a winning combination. By this point in my mothering career I can nurse, and diaper change, and swaddle, and soothe babies in my sleep (and I often do), which leaves all my waking energy to just enjoy those adorable baby faces, and tiny baby sounds, and sweet baby smells. I have never spent so much time just staring at a baby before, nor have I ever enjoyed it so much.

I have to insert here a pat on the back to my Mom who made all those staring hours possible. She stayed with me until yesterday taking care of all the household chores so that I could rest and enjoy the little guy. If she hadn't, I probably wouldn't be quite so energized and upbeat right now.

The kids have really taken to the baby. There haven't been any outright signs of jealousy, although Toby has seemed a little lost as to how to act around his brother. He has been oscillating between his "time to show off for company" mode and his "time to whine and be clingy because I'm insecure" mode all week. This is to be expected, and he is gradually growing more comfortable with Elijah. Toby knows that he can "read" books to Elijah, sing him songs, and gently rock the bouncy seat. He has also generously shared his kiki with Elijah and loves to be told that he is a good big brother. He says over and over, "Isn't baby Elijah so cute?!" Today when I got dressed he looked at my shirt and said, "Oh! That is a beautiful shirt! You look so beautiful!" One week postpartum and in my sweatpants, that was just what I needed to hear.

Hannah has been my number one helper with Elijah. She loves to sit beside him and read him books. She lets him hold her finger and says that he has caught her in his "sister trap." She knows how to start his swing and put his pacifier in his mouth, and she too loves to share her special Piglet blankie with the baby. This morning she came to snuggle beside me in bed and just stare at Elijah while he slept.

Naomi has been slightly slower to warm up to Elijah, but is quickly becoming a great help as well. She has spent the majority of the week reading Hardy Boys books one after another (at least one per day!), but when she does surface to interact with the rest of the world she loves to dote on her baby brother and advise Hannah when Hannah isn't properly caring for him.

Today the kids each got out a baby doll and began practicing diapering and swaddling their babies. They took their babies inside a fort they had built, then Hannah yelled, "Quick, everybody inside! There's a tornado coming!"

"Yeah, hurry!" Toby hollered, "There's a big tomato coming!"

Even Emma was giggling as we all held our babies tightly to guard them from the big tomato. Killer tomato aside, it has been just about a perfect week--one that makes me look forward to the next one.

The New Morning Routine

2011-12-09T10:12:00.000-05:00

5:00am-- Nurse Elijah

5:15am-- Change Elijah's diaper

5:20am-- Nurse Elijah again

5:35am-- Change Elijah's diaper again

5:40am-- Nurse Elijah again

5:55am-- Ahhhhh! Sweet Rest

5:57am-- Listen to Naomi clop down the stairs

5:58am-- Listen to Hannah run down the stairs

5:59am-- Listen to Naomi run up the stairs and into my room to tell me that Hannah couldn't wait for her to get off the potty so she peed on the bathroom floor.

6:00am-- Go downstairs to clean up Hannah and bathroom floor

6:15am-- Ahhhhh! Sweet Rest

6:20am-- Nurse Baby Elijah

.........etc, etc, etc, ad nauseum.........

8:15am-- Coffee! while I hold the cutest, most precious baby in the world, who is worth every minute of sleeplessness. Sleep is so overrated anyway.

Elijah Gabriel Eby Arrives

2011-12-06T12:33:00.001-05:00

My mom and I sat at lunch last Friday discussing our plans for the rest of the day. We agreed that I should cut Toby's hair that afternoon, and probably just do Matt's as well that evening so I wouldn't have to worry about that after the baby was born...if he was ever born. There had been almost no contractions that day and no sign of any changes, so I bathed Toby to remove the dried bits of food in his hair and sent him to the kitchen where everything was set for his haircut. "Go sit down in your booster seat," I told him, "Mommy will be right there and we'll cut your hair." I drained the tub and decided to use the bathroom one more time.

I was shocked and disoriented when my water broke (thankfully, in a very convenient place!) "What in the world was that?! I know my bladder doesn't hold that much. Oh!....Oh!!!! I know what that is!" So I opened the door and yelled for my mom like a little kid. "Mom!....Mom!! Mom!!!" And she came running as I said, "My water broke!"

You have to understand a little background in order to fully feel the gravity of this moment for me. With Emma I had gone from zero labor to delivering a baby in exactly one hour after they broke my water in the hospital. It was so hard and fast that I have been ever paranoid after that that if my water should spontaneously break at home I might not have enough time to get to the hospital before delivery. For weeks I had been saying, "The only real emergency would be if my water broke. We'd really have to hurry then, but that isn't very likely."

My mom's first words were the same as mine, "Oh!...Oh!!!...Who should I call first?" Fortunately, I had anticipated both of our minds being adrenaline fogged in such a scenario and had posted a list of numbers on the fridge and the order in which they should be called. Mom got busy calling my neighbor while I tried to figure out how to appropriately dress myself with this new development. Then I found my cell phone and called Matt. He was working at a blood drive 40 minutes from home and over an hour from the hospital. He didn't answer the first call (apparently because he was pulling a needle out of someone's arm--like that's any excuse). But he did pick up after my second frantic attempt. I was sure I didn't have time to use complete sentences so I just said, "Water broke. Going to hospital. Please come. NOW."

"Are you serious?" he first asked, but I think he quickly realized that I wouldn't call him at work with that message just for kicks, so he didn't wait for me to answer. "OK, I'll leave now," he said quickly. My neighbor arrived and took over the phone calls while Mom and I dashed out the door. Poor Toby never got that haircut he'd been promised, and he clearly didn't understand as well as the girls what was going on, but that explanation would have to wait.

I sat on a pile of towels, navigating my Mom to the hospital. We drove quickly, but began to ease up as we neared the hospital with no real contractions setting in. I called Matt again to let him know he probably had plenty of time. At the hospital my mom could have dropped me at the front entrance, but I didn't want to be left to wait while she parked the car. We headed for the parking garage instead, and I waddled through the garage holding a large bath towel between my legs. Mom and I were both laughing as the passing drivers stared. "Just smile and act confident," I advised, and so we did. In the hospital doors we grabbed the first wheelchair, and I felt much less ridiculous riding on a towel than walking with one between my legs.

The labor and delivery staff first sent me to a triage room, but after a few minutes of my sitting on a soaked towel they realized that there really wasn't any question as to whether the water had broken and decided to just get me settled in a room. I began to relax and let the reality of the situation sink in as I changed to a hospital gown and settled in a bed. I was hooked to monitors and signed papers. Matt arrived just as the nurse was getting my IV set up. My contractions were light and far between so Matt and I walked the halls for an hour to see if it would speed things up. "So was everyone at your work excited when you left?" I asked.

"I don't know," he said, "I didn't wait to see their faces." Back in our quiet room he remarked, "The longer we sit and wait here, the sillier I feel for having rushed all the way here."

"Well, we just didn't know," I replied, "and I'm glad you're here."

At 5:45, just over four hours after the breaking, we agreed to let the nurse-midwife add some pitocin to my IV to help speed up the labor. It didn't take much to put me into a regular labor pattern. We started the quiet music and I began to try to focus my attention, but our nurse seemed a little oblivious. She turned on the florescent lights and jabbered loudly. By the 7:00pm shift change I was very ready for a different nurse. The new nurse was in training to be a nurse midwife. She immediately dimmed the lights and put a lavender scented candle on a warmer. She talked only when necessary in a hushed low voice, and I breathed a huge sigh of relief. She helped me settle on a large exercise ball with Matt sitting behind me. I rocked and breathed and leaned back into Matt, and though it was painful I felt safe and in control of the process.

Around 8:00 the nurse asked if I would like to get into a warm tub. I was surprised since I'd never been allowed to do that in labor before. She said the monitors would work fine in the water, and it felt wonderful even with the extremely intense contractions that were coming now. On the fourth contraction in the tub I said I needed to push. I was shaking when they helped me back to bed. "Well, you're only 6 centimeters," the midwife said. Generally an OB will tell you not to push until you're at 10cms, but the midwife listened when I said, "That's what they told me five minutes before I delivered my last two babies." She quickly donned her delivery gear and prepped the room.

"How do you want to do this?" she asked me, and I nearly couldn't believe my ears. I had been forced to deliver my last four babies while on my back in bed, but the midwife let me stay in control this time. I chose an unconventional position for sure, but she was flexible. No one yelled at me when to push or when not to push. Matt put in some different music I had selected and with the next contraction the midwife checked me again. "Is she complete?" the nurse asked.

"Baby's here," the midwife said quietly. And out he came with what seemed very little effort. "Look, he's holding his cord," the midwife cooed. Matt cut the cord while the baby squawked softly. They placed him on my chest then and left him there for a full hour, something again that I had never had before. Little Elijah Gabriel Eby immediately calmed when placed on my skin. He peeped his eyes open and quietly looked around. We talked to him, and after a while he nursed. Normally after birth I'm being stitched up while someone is weighing and measuring my screaming baby, but this time no stitches were required and my baby was snuggled happily next to me.

"Well," I smiled at Matt, "that was such an easy delivery I think we could have a few more if they'll all be that easy."

Matt laughed and asked the nurse, "How often do you hear that in the delivery room?"

"Um...never." the nurse answered honestly.

Praise God with us for the safe, timely, and relatively easy arrival of Elijah Gabriel Eby. He has been warmly welcomed by his siblings and amazes me with his quiet, alert, and peaceful spirit. But those remarks will have to wait until another blog post. I have a hungry baby to feed.

Progress and Patience

2011-12-02T09:25:00.000-05:00

The Old Wives say that storms send women into labor, maybe because of the change in barometric pressure. Tuesday night, as a snow and ice storm blew over us, I went into regular contractions, but they settled down again after a few hours. At my weekly check yesterday the midwife said I'd moved from 1cm to 3cms, so at least progress is being made.

More strong contractions followed yesterday afternoon and evening. When Matt came home my mom and I went to walk at the mall to see if we could move things along. I waddled as hard and fast as I could (which really wasn't all that fast), until my fingers were swollen and my legs were numb, and I'm sure I looked really ridiculous. After half an hour I had to slow down as the contractions picked up and then stabbing pains set in. We decided to limp back to the van, and things settled down again on our way to a restaurant for a little refreshment. A few strong contractions gripped me at the restaurant, but I tried my best to smile and converse with the waitress like normal.

By the time we arrived home the contractions were mild and far apart. Only a few woke me last night. My sleep was far more interrupted by Hannah, who first lost her blanket then had a bad dream, and by Toby, who needed more water. This morning all is calm again.

The midwife said yesterday that their standard practice was not to let women pass 41 weeks of pregnancy. My next check is on my due date, next Thursday the 8th. If I haven't had a baby by then, they would schedule the "eviction" (as she called it) for the following week, sometime between the 12th and the 15th. I can't imagine living with contractions of this magnitude that long, but I guess we make it through a lot of things we can't imagine. Time will tell.

From the Splendid Mind and Mouth of Toby

2011-12-01T10:18:00.002-05:00

I wish I had the presence of mind to write down every funny thing Toby utters, but then again, I'd be writing all day long. He just has way too much spunk mixed with an amazing vocabulary, and sometimes it's hard to believe what emerges from his mouth.

"Hi, Toby, how are you today?" the church nursery worker greets him.

Toby replies just as natural as any adult heading to play with a car garage, "Oh, I'm doing fine."

He's careful to use complete sentences, even when being defiant. He doesn't just answer, "No!" as any other naughty two year old. He answers, "No! I will not obey!" Which, leaving no room for ambiguity, should secure his punishment--except that when he sees me raise an eyebrow and come towards him, he's quick to recant, "Well...I guess I will." This is a particularly amusing response when I'm particularly ticked and moving quickly towards him, as it comes out more like, "WellIguesswill!!!" followed by a cheesy grin of repentance. But no, the power struggle is not over yet. On more than one occasion I have conceded to forgo the deserved consequences in light of his penitent spirit, only to hear him mutter as I walk away, "Well, I guess I WON'T."

Sometimes he takes a less openly defiant approach. He's learned that a question softens the blow of disobedience. This morning when my mom asked him, "How about you try to go potty now?"

Toby replied, "How about I try NOT to go potty?"

If the action we desire of him comes in the form of a command, rather than a question, he enjoys turning it right back at us. If we say, "Toby you need to go upstairs right now," he finds it amusing to respond, "No, Mommy, YOU need to go upstairs right now." Well, at least it's amusing to say, even if Mommy's response is less than amusing.

He's also pleased with another ingenious consequence-delaying response that he's found. When caught in blatant disobedience I will often question my kids to make sure they understand the coming consequence. I will say, "Toby, what did Mommy ask you to do?"

Toby will have no choice but to answer, "To pick up the crayons."

Since he has openly decided to read a book instead, I will drive home my point with, "And did you obey Mommy?"

Quickly dropping his book and moving to the crayons he will respond sweetly, "Um...not...yet."

Last night as Matt was tucking the kids in bed, the girls were all showing Daddy their Care Bears. "Mine is Rainbow Bear," Hannah shared, pointing to the rainbow on her bear's tummy.

"Ah my ih Guh-ee Beh (And mine is Sunny Bear)," Emma continued, holding her yellow friend.

Toby, looking at the picture of the large yellow trophy cup on his blue bear, responded in turn, "And mine is Coffee Bear!" Which is an entirely logical conclusion, especially if Matt is your daddy.

Later, as Matt gave Emma a hug he said adoringly, "Emma, you're my cuddle bug." Emma smiled sweetly in approval. Matt then turned to Toby and asked, "Toby, are you my cuddle bug?"

"No," Toby replied, "all I have is money." I'm not exactly sure why he said this, but it brings to mind the song "The Cat's in the Cradle" where the father asks his teenage son to sit and talk awhile and the boy replies, "What I'd really like Dad is to borrow the car keys. See you later, can I have them please?"

And just how did Toby acquire this amazing command of the English language? Well, Naomi and Hannah are pretty good teachers, but more than that he's not afraid to ask when he doesn't understand what's being said. The new annoying never-ending question from his mouth is not, "Why?" it's "What does that mean?"

"Mommy, will you give me more water?" He asks.

"In a minute," I answer."In a minute?" he queries, "What does 'In a minute' mean?"

"It means I will fill your cup in a little while, when I'm ready," I retort, losing patience, as I am clearly otherwise occupied.

"A little while? What does 'a little while' mean?" he presses.

To my horror, I have realized that "What does that mean?" can continue just as infinitely as "Why?" And with Toby's realization that language is power, I'm likely to face a lot more "What does that mean?" questions--at least until I've raised up a fine scientific lecturer, or lawyer, or maybe politician.

Another Step On the Path

2011-11-29T18:29:00.000-05:00

For one week now my Mom and I have shared the chores and passed the time playing Scrabble. Yesterday I laid on the couch and smelled homemade chicken soup that I didn't have to make, and I almost felt like a little kid again. As the first snowstorm of the season settles over us, we're hoping there's something to the labor and delivery nurses' claim that storms send women into labor.

Today, as I tried to land my "Z" on a Double Word Score, Naomi's nephrologist called to talk over the results of her yearly tests. Her ultrasound showed nothing too surprising: kidneys that continue to be too dense with cysts, too small, and filling with scar tissue. Her 24 hour urine collection continues to show that her kidneys are dumping an abnormal amount of protein--a sign that they are struggling to keep up with her growth. While the protein isn't a huge amount, it has been there on three separate collections over the course of a year now and clearly isn't going to resolve.

The nephrologist thought it was time to start Naomi on a daily medication called an ACE inhibitor. The medication is normally to control blood pressure (Naomi's runs a little high anyway), but also helps to preserve kidney function in this kind of situation. The idea is to try to ease the burden on the kidneys as much as possible so that the function will be preserved and a transplant delayed as long as possible. Naomi is nowhere near renal failure yet and probably won't be until she is in her teens or twenties, but starting the ACE inhibitor now is a wise way of delaying the inevitable perhaps an extra year or two, possibly more.

It's strange. It's only a little pill once a day--something to add to Naomi's daily vitamins (due to the liver disease) and melatonin (due to the pineal gland cyst) that she takes anyway. But for 7 1/2 years we've bragged that Naomi and Emma were doing so well they didn't need prescription meds for the ARPKD/CHF, and that era is over.

It's just a little pill once a day, but it is the beginning of a lifetime of medication for my daughter. She will never go a day again without needing pills. I'm thankful that she's come so far with so little intervention needed, but it is hard to make the adjustment, to know that only more intervention is to come. I don't want to make more out of it than it is--it's just a little pill. As the liver doctor said in October, just one more step down a path we already knew we were on. It just seems we can't walk this path slowly enough.

Mysterious

2011-11-25T21:01:00.001-05:00

I have truly enjoyed reading over all of my blog posts from last year, but none has so amazed and humbled me as reading "A Pillar of Fire by Night" from November 12, 2010. After over a year of unemployment and living with in-laws, it seemed like God was intentionally blocking every opportunity that crossed our way, intentionally foiling each plan we made, and though we were truly mystified by God's choices we knew he was doing something purposeful. This is a quote from that post:

"Lately Matt and I have taken comfort, ironically, in just how awful some circumstances have been. Last week Matt actually had a job offer over the phone, and we told the kids that Daddy had a job, and their little eyes glowed, and we celebrated! But several hours later the company had to renege because, though they were well aware that Matt's dad worked at the same place, they weren't aware that their company's hiring policy forbid them to hire two family members. "Well," Matt said, "only God could orchestrate something that awful." And, though we're not exactly sure what God was trying to work in that situation, it gave us a strange sense of comfort to know he's doing something in our lives."

It hurt to finally have a job offer, then have it snatched away. It seemed a bit like a cruel trick, like a dangling carrot, like the work of a malicious god, certainly not loving, but even when we couldn't imagine how, we somehow knew it was the act of a loving God. Though the situation grew only more baffling over the next few months, one year later we have the pleasure of peeking behind the curtain and seeing exactly what the wizard was working.

Matt got an awful factory job in January and we took a rental house on the edge of a small town. In April, when Matt's dad left his company, the company called Matt to offer him the phlebotomist job that he had been denied in November. We weren't sure what to do. It would be a better job for sure, but we had settled in a house 36 miles away from it! A couple from our church tentatively offered to let us move into one of their rental houses much closer to the job, so, as much as we didn't want to move again, Matt took the phlebotomist job and we planned another move. We couldn't have been any more puzzled with God's workings than when the rental house with the family in our church fell through. Now Matt had a job 36 miles from our house, a commute we couldn't afford the time or money for. We watched for other rental houses closer to Matt's job, but I had no peace at all with taking any of them. They were in unsafe neighborhoods, or too far from church and family, or too small for our growing family. So we stayed in a house we were happy with, and a job Matt was happy with, even though we ended each month in the red financially. Surely God had something he was working.

It wasn't until Matt landed the job with the American Red Cross one mile from our current house this September that we finally saw the pieces fit together. Matt couldn't get the job that he was offered as a phlebotomist at his father's company in the city last November, because if he had we would have moved to that city and been locked into a less-than-ideal job and housing situation. First, God gave Matt a factory job that enticed us to choose the house we needed to be in. Next, God gave Matt the phlebotomist job far from our house so that Matt would have the training he would ultimately need for the Red Cross job right down the road from the house we already lived in. That job offer that so broke our hearts one year ago was not the act of a malicious deity, it was the loving first step on a bewildering path to a beautiful resting place, and I could never have planned it better myself.

This Thanksgiving we are settled in a home, Matt's job is stable and adequate and rewarding, and we await the birth of our fifth child, who is perfectly healthy. But even better, we have the gift of knowing that the Lord is our shepherd. He leads us beside quiet waters, as well as through dark valleys, but his rod and staff comfort us until we come to green pastures again.

You may never have the joy of peeking behind the curtain and understanding the reasons for the dark valleys you walk, but, baffled as you may be, the promise stands:

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him and he will direct your paths." (Proverbs 3:5-6)

Right-Side Down

2011-11-18T13:19:00.000-05:00

This morning the OB says to me, "So the ultrasound shows that the baby's breech?"

"No," I reply, "actually, that's just what the nurse-midwife thought when she felt him."

The OB wrinkles her forehead and says, "Well, why didn't she scan you?" (How the heck should I know?) "Let's go scan you now, just to be sure we're not wasting our breath." (Good idea!)

And the ultrasound clearly showed that baby was actually...head down! I will never know if he was breech on Wednesday or not. Perhaps he was and he decided to turn because I laid upside down on an ironing board, or perhaps he turned in response to the prayers offered, or perhaps he was always head-down and I just need to be thankful that I didn't turn him breech with all the antics yesterday. Whatever way it is, I am happy.

In defense the midwife, and myself, who had trouble telling the baby's position for sure: the placenta is anterior, meaning it is attached to the front wall of the uterus. This makes it much harder to feel the baby's position since you're feeling through several extra inches of placenta. An anterior placenta also would have disqualified me for an ECV (doctor turning the baby head-down) since the danger of causing the placenta to detach would be too high. So it's a very good thing he is head down!

Once again I am ready to go into labor NOW, before he does flip breech or anymore drama enters my life. Plus, it's the weekend and Matt's on his way home. Time to get this show on the road.

Upside Down

2011-11-16T11:59:00.000-05:00

I wasn't too concerned going into today's OB appointment. Baby had been "oblique" or just a little to the side at my last appointment, but I was fairly confident he had turned to the proper position since he felt much more upright now. I was correct that he had turned, but I was wrong about the direction. Baby is now completely breech. Little stinker. This is more and more likely as I have more babies since the uterus is less tone and baby has more room to move about. The good news is just that though--he still has room to move about. Hopefully he will either turn head-down on his own or the doctor will be able to turn him without much effort.

Unfortunately, I saw a nurse-midwife today instead of an OB, and at this practice the nurse-midwife is not allowed to even schedule an ECV (external cephalic version--an attempt to turn the baby head-down by pressing on the baby from the outside). So I have to go back to talk with the OB on Friday morning, at which time she will schedule the ECV (if he's still breech), hopefully for early next week before baby gets too big or too lodged to turn.

Until then I will be hanging myself upside down multiple times a day, playing music at the lower end of my abdomen, and using hot and cold packs to try to lure the baby to turn his stubborn head southward. And in a drastically new change of attitude, I will also be hoping NOT to go into labor, since the doctors will not attempt to turn a breech baby while I am in labor, nor will they let him arrive bottom-first through the normal route--it would be an automatic, fast C-section if my water broke or labor set in right now. Alas, more drama. Lets just hope he gets his head in gear and doesn't try to exit until then.

A Waiting Week

2011-11-15T22:03:00.000-05:00

My creative genius seems to have been crowded out by this baby right alongside my stomach and my bladder. Days go by when I actually have the time to write in my blog and I can't think of anything to write. I'm sure the kids say and do funny and memorable things--if only I could remember them. People talk about the "fog of pregnancy" and the incredible focus of a pregnant mother on her impeding arrival as the due date draws nearer, and it is all true. I tell myself that I need to enjoy these last few days or weeks before I have a newborn sapping away all of my time and energy, but all I can think is, "Get this baby out!" I remember when I was pregnant with Hannah, how Matt tried to convince me that the longer she stayed in the better--she would be easier to care for when she did come out. But after days of me not being able to think about or talk about anything else, even he was ready to have Hannah arrive so that we could move on with our lives.

There have been some funny moments, but when they happen I am so unmotivated to put in the effort to write them in my blog that they just become short facebook posts instead. Then I sit down to write in my blog, and I've already used up all my funny stories. Ah, well, I'm sure that once this baby comes I'll have tons of new material to blabber on about. Until then, here's a brief update on Eby household happenings.

Matt is out of town again this week for more training. This new job has a ridiculous amount of training overkill. He is staying (all expenses paid) in a nice hotel and eating three restaurant meals a day. I am staying at home with all four and a half children and eating beef stew from a can, because when Matt's not coming home to dinner all my ambition to spend the afternoon cooking quickly disappears. The kids have been enjoying continuing their bedtime routine with Daddy via video conference over the Internet. Apparently The Hardy Boys are just as riveting over Google Chat as they are in person because all three girls sit stone still and listen for half-an-hour to their virtual dad reading, and I get a nice little break.

Naomi continues to be healthy and extremely helpful, and I continue to be amazed and thankful. She often helps to get Toby dressed and fed. She folds laundry, empties the dishwasher, and just pitches in graciously when asked. Today at lunch she did admit that she wished there was a "reading land" where she could just read all she wants to. I said I couldn't imagine her reading much more than she already does. Hannah offered that maybe in reading land Naomi would even be able to read while she eats and sleeps.

Hannah has been following in Naomi's footsteps with a love a reading. How could she not learn to love reading with such an example? At the age of five, when public school would have her learning her letters, she is reading 2nd grade chapter books with great comprehension. She has also taken up reading to Emma and Toby, which makes everybody happy! Unfortunately, Hannah has also taken a turn for the unstable again. She goes through phases of emotional upheaval unlike any of my other kids. Lately everything sets her in tears, and it seems that the more individual attention I give her, the more she craves. I instinctively back away from this bottomless-pit of neediness, but I'm trying to overcome my fear of being sucked in and give her the extra time and attention she obviously needs right now.

Emma has been blossoming quite beautifully lately. She's finally taken off with learning to recognize and write letters and numbers. She's become quite the artist with stick figures and smiley faces, and she's so very proud. She should be. Special speech preschool has been good for her self-esteem, even if her actual speech hasn't improved much at all. While Hannah seems to burst into tears over everything lately, Emma seems more content and confident than ever--which is good for me, because two bottomless pits of neediness might just consume me completely.

Toby doesn't understand why Emma won't talk properly, and he's begun either correcting her or making fun of her regularly. He means it all in good fun, and she seems to take it well, but I'm a little at a loss as to how to answer him when Emma tries to say "Okay" and Toby asks me, "Why does Emma say 'Ogay'?" He has also begun experimenting with substituing a "g" for every other consonant the way Emma does, which amuses him greatly and irritates me to no end. I don't need two people speaking Emma's dialect around here.

Toby cares nothing for using the potty, unless it's bedtime, of course. Suddenly, the boy who hasn't voluntarily sat on the potty all day has to sit and dribble out a half-ounce every ten minutes, but I hate to discourage him. It's win-win for him. He gets to get out of bed, and Mommy has no choice but to praise him for it. He then milks his advantage further by asking with all sincerity, "Do you know where my bed went? I can't find it." Somehow my assurance that it's likely right where he left it, doesn't satisfy him. So up the stairs we go and I tuck him in again, for another 10 minutes.

Toby is also antsy. All Mommy wants to do is stay home and rest. All Toby wants to do is go--somewhere, anywhere! Just say the word and he's putting on his own shoes and coat now, ready to break out of this prison cell. Unfortunately, Hannah suddenly doesn't want to go anywhere. She burst into tears at the same time that Toby started celebrating when I told them they were going to a friend's house tomorrow while I'm at a doctor appointment. Hannah likes this friend's house, but she says she just wants to lay in bed, for a long time. She does have a nagging cough and a stomach ache, but I suspect that all the changes coming have her longing for security beyond physical rest. I know she is excited for the holidays and the new baby, but sometimes we can be excited and apprehensive at the same time, and I think she's caught in the middle of it all.

I am convinced that I will go into labor any minute now, and I will probably remain so convinced for another three or four weeks, but don't tell me that, or I may punch you. I am thankful that I have family visiting this weekend and my parents coming for Thanksgiving next week. I need to be kept busy and distracted right now. If all looks normal at my OB appointment tomorrow I'll be settling in for another week of waiting. If not, well, at least I'll have something more exciting to write about.

Getting on My Nerves

2011-11-06T20:23:00.000-05:00

With one month and two days to go until my due date this baby has been getting under my skin and on my nerves, and recently he's become a real pain in the rear. I've had periodic nerve pain at the end of my other pregnancies, but this little boy has taken it to a whole new level. I will be innocently going about my life when searing pain will shoot down the back or inside of my leg, causing it to buckle underneath me. It's not a conscious choice to relieve the pain, it's reflex that I have no control over at all.

Last week I was standing at the kitchen table chopping vegetables when the pain struck and I barely got the knife down and my hands on the table to steady myself. Yesterday was particularly challenging because the pain came relentlessly again and again. I was shopping and only stayed upright because I could lean on the cart. I was cleaning and had to grab for the nearest chair or counter. Twice I was literally stuck on the floor after changing Toby's pull-up. The nerve pain gripped me every time I tried to move my right leg at all. Matt had to come behind me and hoist me up, and back on my feet again I was fine, at least for a few minutes.

Today at church I moved cautiously, staying near chairs and counters and walls, and several times I was struck and had to steady myself. I feel like I need to go out and buy a cane. Tonight at dinner Hannah offered these reassuring words, "Well, Mama, if you can't get off the floor tomorrow when Daddy's at work, we'll just bring everything to you that you need."

"No," Matt said, "what you girls need to do is get a big wheel and hook it to the ceiling and throw a rope over it. Then you can all pull Mommy up off the floor." The girls all giggled. Ha ha.

When I pointed out that cardboard and scotch tape probably wouldn't hold me up these days, Hannah had an even better idea. "We could get one of those machines that they use to build buildings, like the one that lifted the tree off the Baron's house. What's it called?"

Matt's eyes laughed, "A crane? Yes, you could get a crane to hoist Mommy off the floor! Good idea, Hannah."

I just want you to know, in case a crane pulls up to my house tomorrow, not to worry. It's just my children helping Mommy off the floor again.

You Mash It, You Eat It

2011-11-01T20:36:00.000-04:00

Yesterday morning, after my angelic daughters folded two loads of laundry for me, I headed upstairs with the hefty basket full of folded laundry. It was an accomplishment to make it to the top with that basket, and my heart was still pounding when Toby appeared at the bottom of the stairs with a banana. "I want a banana!" he demanded, "Open it!"

I was not about to run back downstairs so soon. "Toby," I informed him, "if you want me to open the banana you have to ask nicely, and I'll open it for you after I put the laundry away." He knows what it means to "ask nicely" and he often does, but yesterday he was in the mood to assert himself, maybe just to see what would happen.

"No!" he yelled back at me. "Open it now! Open it! Open it!" When I raised an eyebrow at him and then walked away, he laid down on his stomach at the bottom of the stairs and began pounding the banana on the floor as he yelled over and over, "Open it now, Mommy! Open it! I want a banana! Open it!" The only reason he was spared immediate consequences was that I was determined to get the laundry put away before heading back down the stairs again. Perhaps he thought he was gaining ground with me, perhaps he was pleased with himself, or perhaps he was ticked that I was ignoring him, but he pounded all the louder as he yelled.

Once the laundry was away I calmly walked back down the stairs. He stopped and looked at me like, "Now what?" In the silence I said calmly, "Toby, let me show you what happens to a banana when you pound it on the floor." I strapped him into his booster seat in the kitchen and removed the peel from a pile of brown mush. "You said you wanted this banana," I continued, "I asked you to wait until I was done putting laundry away, but you banged it on the floor. Now it's all yucky. You made it yucky, and now you're going to sit in that chair until you eat it."

Suddenly Toby didn't want the banana so badly anymore. Actually, he didn't want it at all. "No!" he yelled at me. "I don't want that banana! It's all yucky! Put it in the garbage!"

I knew I was setting myself up for World War III, but I also knew this war needed to be fought, so I dug in my heels. "No, Toby. You smashed the banana because you wanted it. I'm not letting you out of that seat until you eat it," I reaffirmed. And so it began.

You would not believe the way this strong-willed little two-year-old boy carried on. He was not pleading for mercy either, he was defiant! "No, Mommy! I won't eat it!" he screamed loud enough for the neighbors to hear. "I WOOOOONNNNNN'T!!! It's YUCKY!!! Put it in the garbage! Put it on the floor! It's gross! I want a different banana! YOU eat it, Mommy!"

I sat out of sight, trying my best to block him out. From time to time I reappeared to make sure he still remembered why he was in his booster seat and what he had to do to get out. He remembered just fine, but he figured he'd rather die of a cardiac arrest or at least lose his voice for a few days first. This went on for two full hours! Sometimes he would stop sobbing and screaming and I would go back in and even give him a hug, and ask him gently if he was ready to obey. Suddenly he would stiffen and remember that he was at war with me, and it would start all over again.

Near the end of the second hour I came into the kitchen to cook lunch. Toby was pleased to hear this, but flew all to pieces when I informed him that he wouldn't have any lunch until he ate the banana. I guess that wasn't what he was hoping to hear. By the time I was done making lunch and dishing up everyone else's plate, Toby sat with puffy red eyes, lifelessly staring at the pile of brown mushed banana in front of him. I reminded him one more time that that was the banana he had pounded on the floor, and that he needed to eat it since he had smashed it. This time he didn't yell in defiance, he sat and looked sadly at it. "Should we pound bananas on the floor?" I asked him.

"No," he said remorsefully.

"What happens to them when we do that?" I continued.

"They get all yucky," he admitted.

"Should you have waited patiently for Mommy to open your banana?"

"Yeah."

Seeing that his spirit had finally bowed to my authority, I decided to compromise, "How about you just eat one big bite?"

He brightened up and readily agreed. One bite of mushed banana went down, and one boy happily ate lunch and took a good nap. My ears stopped ringing about the time he woke up again. He hasn't smashed any bananas since, and I've heard a lot fewer defiant words from his mouth. One point for Mommy. Now if only I could get him to use the potty.

Return of the Night Shift

2011-10-29T22:13:00.000-04:00

The day we moved into this house we found that we could not fit a queen-sized box-frame around the turn at the bottom of our stairs. Apparently queen-sized beds didn't exist in 1890? Our only choice was to cram the more moldable mattress up the stairs and just lay it on the floor. We were fine with this arrangement at the time, but I remember thinking to myself, "The only time this could be a problem is in the last couple months of a pregnancy." And here we are. Not only is it difficult to get oneself out of a bed on the floor when one can no longer bend in the middle and one's middle weighs an extra 20 pounds, but pregnant women are also plagued by the need to use the bathroom somewhere between three and ten times in a night, and the only bathroom in this house is downstairs.

On top of my need to catapult myself off the floor and traipse down the stairs to the bathroom every hour or so, the children have decided to sabatoge most of the remaining minutes in between my regular travels. I had enjoyed a long period of relative night-time peace, but somehow the stars have aligned against me in the last week or two and all four children have decided to become nocturnal hunters. I am the prey.

Toby has once again decided to take in most of his liquids at night--it's only water, I have no idea why this is so appealing to him, but because of his unknown kidney condition I am hesitant to limit his intake--this, of course, causes him to flood even the most absorbent night-time pull-up. Somewhere around 3am, if I haven't remembered to change him earlier, he will wake up screaming that he's wet and if I don't hear him screaming, I'm sure to hear Hannah yelling at him to be quiet. I change his pajamas, lay a towel over his wet bed and call it good enough, but he wants more water. Sure, little buddy, why not send Mommy down the stairs yet another time tonight so you can wet through your pajamas again before morning? And down I go, and up I go, and back into bed I flop.

Not long after that Emma will wake in a coughing fit. She has always been sensitive to viruses. Any little bug will set her wheezing and coughing like a life-long smoker for weeks, and she happens to be going through another several-week battle with some germ. She will thunk wildly as she coughs, fling open my door and plop herself down on the bed I have all set up for her on the floor beside me. I will sigh, give my pillow one last hug, and heave myself back up out of bed again. At least, because I've anticipated this visit, I have a dose of cough medicine and the nebulizer treatment all set up and ready to go--no more trips downstairs this hour. But alas, Emma has drained her water bottle as well and the cough medicine tastes nasty--down I go again, and up I go again. She drinks, she breathes the albuterol mist, and her cough quiets at last.

I want only to rejoin my long-lost pillow in bed, but I decide that I'd better make a last bathroom stop, since I'm already out of bed. Down and up again. I flop in bed, and endure at least ten minutes of protesting squirms from the baby within. Finally he quiets, I relax, and I begin to drift to sleep...until Emma drifts to sleep just before me and begins to alternate wheezing inhales with snoring exhales. She sounds like an elephant slurping in a trunk-full of water and blowing it back out again every two seconds. I contemplate waking Matt and asking him to carry her back to her bed, but her wheezing is just severe enough that I figure it's safer to keep her beside me, just in case she gets in distress. I lay awake trying to find a song that fits the beat of her snoring, just to amuse myself, and I finally drift to sleep.

It won't be long until Hannah sneaks in to ask me if that thunder she heard was a normal thunderstorm or a severe thunderstorm; or Naomi wakes to use the bathroom and, because her ankles don't bend well, she thunks down the creaky stairs with all the grace of a hippopotamus; or Toby wakes again crying in delerium from a bad dream; or Naomi wanders in to let me know she's having trouble sleeping and ask if it's OK to get up at 5:30am; or Matt's alarm clock goes off because he has to work early today.

Some mornings the children have been angels and have blessed me greatly by waking quietly, playing peacefully, and waiting patiently while Mommy sleeps in, but then there are mornings more like this morning. This morning I lay listening to Emma and Toby fight over and over in their room and when I called Toby in to scold him for taking Emma's toy he informed me that his pajamas had orange juice on them. When I asked him why he admitted plainly, "because I spilled it...all over...and it made a big big mess."

Today I was also blessed to develop Emma's cough. This apparently disturbs the little baby within as much as me since he has to do a few sommersaults everytime I cough. I probably need sleep more than ever tonight, and I probably ought to head to bed, but I doubt I'd find much sleep there. Here's hoping this virus will soon leave us, the children will give up their nocturnal roamings, and I will find rest again before my fifth sleep-thief arrives. Then again, maybe this is good practice for what lies ahead when he comes.

Restless Nesting: Hinges and Doorlatches

2011-10-25T20:18:00.001-04:00

On February 24th, I posted Cordelia's Hinges to share how I was enjoying even the painstaking work of cleaning up the details of our new home. At that time I had high hopes of continuing to clean hinges, window pulls, and other antique details, but once I found out I was pregnant in March, that all came to a screeching halt. Nausea, fatigue, and concern for the baby's safety when working with chemicals and possible lead paint left my project counter covered in tools and my hinges covered in paint.

Recently my nesting urge has picked up, and while I only meant to clean off that cluttered project counter, I couldn't resist indulging in a little bit of hinge-cleaning on the side. Don't worry, I was painstakingly careful about the baby's safety. I scraped the paint outside in the fresh breeze while wearing rubber gloves. I covered all chemicals with lids and left the doors open to ventilate the house. And I worked in small intervals with plenty of rest and fresh-air breaks. He was safe, I promise.

There was one door catch on a door to my kitchen that had been bothering me. I think it cleaned up pretty well.

And one very visible door, off of my living room has been glaring at me with broken, ugly hinges for far too many months now. This simply had to be remedied. When my front door was replaced shortly after we moved in I saved the old hinges before it was thrown away, hoping to one day clean them up and use them to replace some broken hinges. Here was the result:

Top hinge before

Bottom hinge before

Top hinge again

Cleaning up the hinges I had salvaged from the old front door

Hannah said she liked the pink hinges better, but I had to disagree

Off comes the pink

Top hinge after replacement

Bottom hinge after

A full-door view

I am pleased with the results, but strangely enough, it seems that hanging an enormous solid-wood door on hinges when seven-and-a-half months pregnant does serve to exacerbate both heartburn and backache. Therefore, with this little stunt out of my system, I have retired my exacto knife and cleaning chemicals to the basement, where they shall stay for at least a few months. The rest of the antique detailing can wait: I have enough general organizing and scrubbing to do to satisfy my nesting instinct for the next few weeks.

Low White Cell Counts: October Update

2011-10-18T17:02:00.000-04:00

I was a little nervous driving back to the children's hospital today after the flat-tire incident last Friday, but once we'd passed the infamous corner where I'd waited three hours for a tire change I relaxed, the morning sun lit the gray October sky, and I almost enjoyed the drive. It was an early morning today trying to get all four kids out the door in the black night of 6:00am. The younger three enjoyed the day with Matt's sister and her kids, Naomi and I had plenty of time together again, and I wasn't plagued by too many contractions as I drove.

The whole day went completely on schedule, in fact, and our appointment, which was certainly necessary, didn't bear any surprising new revelations or begin any new crises. Naomi's GI doctor said that Naomi's spleen had enlarged another couple of centimeters, and while her low white cell counts and enlarging spleen are certainly signs that the liver fibrosis is progressing and causing the pressure in the portal vein to rise, that is exactly what we knew would happen, and it is happening very slowly. She (the doctor) did not seem at all worried at these new signs--they are simply a few more steps along a road we already knew we were traveling. She still felt that major complications such as severe immune deficiency and sudden GI bleeding were probably years away.

The doctor also clarified that Naomi's white cell counts might not actually rise out of the "normal" range when she is fighting infection, something I wish the ER doctors had known when they kept insisting that Naomi's white cell counts were "normal" and I kept saying "but they're high for her." It is possible that, with Naomi's condition, boosting the white cell counts into the "normal" range from "below normal" is all Naomi's body could muster to fight infection. However, while this might confuse the ER doctors, the GI doctor did not feel that Naomi was severely immuno-compromised yet or that she was in danger of not being able to effectively fight infection.

So, while Naomi may one day face severe immune deficiency and life-threatening GI bleeding, that day is still a good distance down the road. For today there is no quarantining Naomi from germs, life-flighting her to the children's hospital, or planning major surgeries. Today the doctor ordered some blood work to re-check on the status of the celiac disease, the liver function, a blood count, and some vitamin levels that have been running low. She decided she would like to see Naomi every six months now, instead of every year, and she gave us some information on being involved in a new multi-national study on infant siblings of children with celiac disease that is designed to settle the debate about whether early introduction of gluten to babies with the genes predisposing them to celiac increases the risk of the child developing celiac disease later in life.

Today we drove home under the gray October skies and dragged three reluctant siblings from a house that was clearly more fun than our own. Today the three girls are setting up a pretend veterinary clinic and doctoring up a line of illness-and-injury-stricken stuffed animals while I cook dinner. And I'm thankful for today.

Flat and Futile

2011-10-14T18:16:00.000-04:00

First, before you say "typical girl" to yourself or "that's a pregnant woman for you," let me remind you that the way we process life's circumstances and the decisions we all make are based on the previous experiences we've had. Shortly after we were married one of the rear wheels on Matt's old Ford Escort began grinding and the back end of the car swaying. We were told by a mechanic then that the wheel had nearly fallen off. We were also recently told by a mechanic that something was wrong with the back end of our Toyota Camry that caused it to feel a little loose and rattle, but that it didn't pose a safety hazard. With these experiences in mind, I think it was actually quite understandable that I immediately assumed that mechanic had been wrong when the Camry began to shake and make a horrific grinding noise today on my way to the Children's hospital with Naomi.

One hour away from home, I had just passed a rest stop, feeling that I could make it to the next one, when there was a sudden, horrific grinding noise from the back end of our Camry and I felt the car become difficult to control. I immediately pulled into the right lane, then the shoulder, and about ten yards further to the intersection of a small side road. Shaking with the adrenaline surge, I was adequately prepared to defend myself from any attacker, but found it more than a little difficult to think clearly. I began to hop out of the car so I could have a look at the rear wheels, but I thought, "Silly girl! What in the world am I going to see? If something is that seriously wrong with the car I might as well stay put and call a tow truck ASAP." But where was my cell phone? OK, there it is. Now who am I calling? Oh yeah, I have AAA coverage. Where did I put that card?

So I proceeded to call AAA and order up a tow truck, then my friend who was watching my kids, then another friend who agreed to drive down and pick me up, then my parents because, well, they're my parents, and then Matt's voicemail, even though I knew there wasn't a thing he could do, and finally the children's hospital to cancel Naomi's appointment. By that time I realized I needed to save my cell phone battery so I sat a minute watching the wild clover wave in the ditch beside me. Finally, I decided there couldn't be any harm now to taking a look at the back wheels, even though I most certainly wouldn't be able to see anything, and it obviously wouldn't change my situation at all.

Coming around the rear end of the Camry to the passenger side, I suddenly felt utterly ridiculous. The tire was completely flat and ripped to shreds. It looked like Sasquatch had attempted to eat it for lunch. Oh. A flat tire. Right.

For half a second I wondered if I should be able to handle this myself, but 0.5 seconds later I recalled that my last lesson in flat-tire changing was fourteen years ago in driver's education class. About that time I also recalled that I was seven months pregnant and that squatting for an extended period of time while trying to turn lug nuts with all my might would probably be less than an ideal way to spend my morning.

One humiliating phone call to AAA followed to change my tow truck request to a tire change request. "Umm, so I actually looked at the car, and...it's a flat tire...sorry...guess I should have looked before I called you." Then I called my friend, who was nearly half-way to meet me and told her to turn around and go home. "Um...sorry...guess I should have looked at the car before I called you...oh wait...maybe I should make sure I actually have a spare tire in the trunk...hang on...um....yep, OK, you can go home now." And then I called my parents, and then Matt's voicemail again. Regaining consciousness, I began to compute just how late I would be to the neurosurgery appointment, and decided that I could still try to make it there after my tire was changed, if they would accommodate me showing up two hours late. Unfortunately, they would not accommodate the pregnant lady with the sick daughter and the flat tire. Rules are rules, sorry, then next available appointment is November 3rd, ma'am. So I booked us for November 3rd and wondered just what adventure I could look forward to if I went into labor on my way to that appointment. And then my cell phone battery began beeping, so it was just me and Naomi and the waving ditch of purple clover.

It was a pretty ditch, and I was thankful that it was a warm day and that I had packed lunch. I almost could have been content to wait for the service man to change my tire, except that by this point my bladder was threatening to burst. I looked back at the horizon where the giant McDonald's/BP rest stop mocked me less than a mile away. Then I looked at the warm, inviting ranch house just in front of me with the well groomed yard and the pretty mums beside the porch. I calculated the odds of a demented mad-man living in that house and grooming his mums just hoping to lure in some innocent lady who had car trouble nearby, and I found the odds fairly low. I decided to take my chances ringing that doorbell over squatting in a ditch with ankle-high clover beside a busy highway.

Naomi skipped happily in front of me to the house and we rang the doorbell...once, twice, three times, but alas, either no one was home, or the demented mad-man inside decided to wait until I died of a ruptured bladder before making his attack. Back to the car we went, where I sat looking at the McDonald's/BP sign and then the ditch, and back to the sign. About this time an old man with a white beard pulled up beside me and rolled down his window. Thankful for his gesture of concern, I opened my door and walked to his van window. "It's just a flat tire. I'm OK, triple-A is on their way," I assured him.

He wrinkled his forehead and looked at me with contempt, then remarked in all seriousness, "Didn't your daddy ever teach you how to change a flat tire?!"

Taken slightly aback, I responded, "Well, I learned thirteen years ago, but I am seven months pregnant now. I think I'll let triple-A handle it." He slobbered slightly on his beard, shook his head in utter disgust, and drove away. With that new temperature reading on the local hospitality I began to feel fortunate that no one had answered the door at the house.

I passed time in my car wondering if someone had actually slashed my tire on purpose the night before and composing nasty letters in my head to the cruel person who would do such a thing. Then I calmed myself and went over again in my head all the things I was hoping to discuss with the doctor today that would now have to wait until November 3rd.

The recent CT on Naomi's spine had shown "incomplete fusion of the posterior elements at L5," which means that one vertebrae in Naomi's lower back hadn't formed properly. Apparently this can be a normal variant of anatomy that causes no problems whatsoever, or it can accompany other spinal-cord abnormalities, namely a "tethered cord." The Internet articles had warned that a tethered cord, which is generally a birth defect but worsens over time, can cause club feet (which Naomi has) and a host of neurological symptoms as the child grows, including back pain and Naomi's newest symptom: pain trying to uncurl her toes.

I had wavered about whether or not to make another trip to the neurosurgeon to ask about yet more strange symptoms and my Internet research. Sometimes I just feel like I must be the most annoying, paranoid mother to these poor doctors. The spinal abnormality could be harmless. Naomi's club feet could very well be due to low levels of amniotic fluid during pregnancy because of her kidney condition. It's just that that explanation has never fully satisfied me since Naomi's kidney function was more than adequate when she was born, no ultrasound or measurement ever suggested I had low amniotic fluid, and her kidney condition actually causes her to pee excessively, not too little. Her recent symptoms of tight legs, worsening club feet, and painfully curled toes could be a result of tight tendons and ligaments because she laid in bed for too long in the hospital without stretching them out. But these could all point to a tethered cord as well, and that would offer an explanation as to why what should have been a routine spinal tap caused her excessive pain for weeks afterwards.

I had called the neurosurgeon two weeks ago to discuss some other concerns with him, and I had not ever received an answer. Then, on Wednesday, when I was about to call him again with my new concerns, I suddenly received a computer generated courtesy call to let me know that his office had taken the liberty of scheduling an office visit for Naomi today at 1:00pm. I decided that must be a sign that I should drive Naomi down to see him again and ask him about my new concerns.

But here I sat, me and the clover ditch and the mad-man's house, not any closer to answering the profound medical mysteries inside my daughter. I wondered for awhile if she would be better off without me constantly dragging her around to doctors appointments, but then I recalled just how much she has improved in the last year since I pushed for answers and found that she had celiac disease and a host of other food sensitivities. The stomach aches are gone, the joint pain has vanished, the tantrums have diminished greatly, and it is because I relentlessly pushed for answers. Whether I seem crazy or not, I know that I must continue to ask questions and demand accurate answers: the consequences of my laziness could be too great if I didn't.

Exactly three hours after I placed the SOS call to AAA, and just as I felt I must be succumbing to water intoxication, a tow truck arrived. A kind man hoped out, jacked up the car, popped on the new tire, and had me back on the road in under five minutes. God bless that man. He also assured me that no one had slashed my tire, but the wall had blown out in seven places as I drove to the shoulder and pulled off the road. A large silver screw embedded in my tire was enough evidence of the cause of my troubles.

I was back at the McDonald's/BP travel stop thirty seconds later. Within an hour I was safe at home, wondering why my day had been completely consumed by futility. I may never know, but I can decide to be angry with the unforgiving universe or I can decide to be grateful to the God who put a screw in my tire. Maybe the doctors appointment isn't what Naomi or I needed today. Maybe it's better if I remember that today was ultimately out of my hands, much the same way my daughter's health is. There's rest in remembering that.

Farewell to Summer: An Apple Orchard, Lake, and Eby Home Album

2011-10-13T16:08:00.000-04:00

Sometimes, as I sat in Naomi's hospital room, I thought about the fall we were missing: the apple orchards and lakes, the crisp sunshine and the colorful leaves. So when Indian Summer made its glorious appearance last week, I tried to make the most of it, beginning with visiting the nearby orchard last Saturday with our cousins.

I marveled at the colorful ridge of trees just across the highway.

Even our house seemed to fit in better with the fall weather.

We watched the farmer harvest the bean field outside our front porch.

Then we went to the orchard again! This time with a home school group.

This girl gets thirsty!

Yesterday was Matt's day off for the week, and the weather couldn't have been more beautiful with sunny skies and 75 degrees, so we took the kids to a nearby lake for some playground fun and wading.

Emma looks like she's in a guillotine here :)

Beautiful swans...of course, you can't tell they're hissing at the kids!

So much for rolling up the pant legs...good thing I brought spare clothes.

Beautiful summer,...

...farewell until next year.

Recovery Week

2011-10-10T22:00:00.000-04:00

People say that it's only after the traumatic subsides and the dust clears that we truly realize just how exhausted we are. This is probably why I haven't written anything in my blog for over a week. It has taken that long for me to feel like I have any energy or ambition to do anything but nap. Perhaps it's because I found myself buried under a mountain of dirty laundry, or perhaps because my midsection has grown to the approximate size and weight of a small mountain, or perhaps it's just that every molecule of stress hormone in my body had been expended after Naomi's last three days in the hospital, but napping suddenly took priority over all else.

Not that I've had an excessive amount of time to nap. Matt was still in training out of town all week last week, so beyond the childcare and housework falling to me, I also took the kids down to visit him one evening and swim in his hotel swimming pool. Though the evening was a success I think I've had to conclude that the days of car trips are over for me until after this baby is born.

I've also concluded that I like pregnancy less each time I am pregnant. With Naomi everything was so new and exciting, the wonders of new life within me far overshadowed the discomforts of carrying a watermelon under my skin. Now that I've experienced every wonder five times, it seems far more appealing to be the only one living in my body again. I feel slow and awkward and breathless and tired and sore, and this child seems determined to make an exit straight through my abdominal wall any minute now.

So I make an effort to lay down each afternoon now, but it is easier said than done. It takes more than ignoring the housework to get rest in this house. The baby protests with squirms and kicks each time I cease moving, and I'm sure he's crying with all his might in there. I smile and think, "Cry all you want now, baby. I can't hear you!" but those powerful kicks to my ribs can be hard to ignore. Toby has been protesting his nap as well lately, and some days I have to settle for resting and listening to him ram trucks together in the room next door. Usually my girls are relatively well behaved when I rest, but occasionally a fight does break out over who had the idea to dress the baby doll as Queen Lucy first, and adult intervention is required.

Toby, over a year ago, sleeping with kiki and vacuum

Yesterday afternoon one of my worst nightmares came to life, and I feared I might never sleep again: Toby's kiki went missing. "Kiki" is what Toby has called his white blanket with the satin trim ever since he began baby-babbling, and kiki is an essential ingredient to any peace and quiet in this house. Kiki is usually filthy and stinky, though he's washed several times a week, but Toby doesn't mind, and kiki must travel with us, wherever we should roam. Yesterday, after a long morning at Sunday School and church and a fellowship meal, Toby grew cranky in the van on the way home. I turned to grab his kiki from the diaper bag and made a heart-stopping discovery: kiki wasn't in the diaper bag.

Matt turned the van around and ran through the church building while I sat in the van with the kids, but ten minutes later emerged to ask, "Are you sure it's not in the van? Because it isn't in here!" It most certainly wasn't in the van, and Toby had no recollection of where he'd left kiki, so I joined Matt in his search, along with several others from our church. We opened every cupboard and drawer and looked behind each unlocked door. We looked under tables and cloths and couches. We looked in the nursery, the library, the offices, the closets...but no kiki. I started running through the nearby stores in my mind, wondering which ones might have a white waffle-weave blanket with satin trim in stock. Finally Matt got a key and unlocked a Sunday School room that had only been unlocked for a smidgen of time before the church service, and there, tucked fully away within a craft-supply cupboard, was Toby's kiki.

Last night I had the usual interruptions to my sleep: a perpetually squished bladder and a restless baby inside me, Toby peeing through his pull-up all over his sheets, Emma wanting to sleep on my floor because she had a bad dream, and Naomi complaining of a mysterious ache in her arm, but at least we had the kiki. And, with kiki in custody, I have every intention of prioritizing rest again this week, for whatever it's worth.

The Infection (part 2)

2011-09-30T11:06:00.000-04:00

...continued from Thursday, September 29th...

Around 2:00am the ER doctor returned and apologized for making us wait. He said that after speaking with the radiologist he learned that a CT scan would not be as sensitive to picking up a spinal abscess as an MRI, and we would have to wait until morning to have an MRI done. By 3:00am we were finally settled in the same room on the fourth floor that Naomi had stayed in over a week earlier. There was a measure of comfort to the familiar surroundings and the familiar nurses, and Naomi dropped right to sleep. As tired as I was, I lay awake fighting with an uncomfortable recliner and going over and over Naomi's situation in my mind.

There is enormous burden on the shoulders of parents who have children with complicated medical issues. I know that only I can keep in the forefront of my mind all the medical information pertinent to Naomi's case. I know that I know more than any doctor in this town about the specifics of Naomi's medical conditions. It is a rare combination of rare conditions and the doctors and nurses daily make mistakes that I feel the pressure to protect Naomi from. I stand guard at her beside, and before any medication is given to Naomi now I must ensure that is not an NSAID such as Ibuprofen or Motrin since those cannot be given to patients with polycystic kidney disease. Four times in two weeks I have caught nurses attempting to administer an NSAID to my child on doctor's orders. I must ensure that the medication contains no gluten, dairy, or red dyes. The gluten and red dyes have been nearly given to Naomi too many times to count now though every paper in her chart clearly marks them as allergies, and a bright orange allergy sign lists them above her head. The doctors are all too quick to make decisions regarding Naomi's care without thoroughly reading her medical history, so I feel the need to review and question each decision they make. I finally drifted to sleep around 5:00am.

Naomi was awake again by 7:00am. She had no appetite, but was thirsty and cried when I explained that she couldn't drink until after her MRI that morning. She requested more pain medicine and we waited. At 10:00am the technicians wheeled her down for her MRI. She was quiet and half-asleep as they hooked her to monitors. All was well until the Versed that was supposed to keep her asleep during the scan was injected into her IV. Suddenly Naomi was restless and irritated. When the nurse tried to cover her ears with sticky foam pads to protect her hearing she suddenly flew into a rage. She screamed and covered her ears. I immediately recognized it as a reaction that Naomi has when overtired and overstressed, especially if a certain drug such as red dye or steroids or, in this case, Versed makes her more irritable. I knew at that point that the only chance of her recovering would be for everyone to leave her alone for fifteen minutes until she settled, but the nurses were pressed for time to complete the MRI before the Versed wore off. I stood by, knowing it was futile, as the nurses attempted to soothe Naomi, then chide her, then pin her down and force her to comply. She only grew more violent, kicking and screaming and ripping her monitors off. And eventually, for everyone's safety, the MRI was cancelled and Naomi was sent back to her room.

For the first time in the past weeks of medical mayhem I felt tears in my eyes. I couldn't have been more tired or discouraged or worried about my daughter than at that point. We had stayed in the hospital just to get that MRI, and her care was to be based on its findings. Now what? Back in our room, Naomi's pain increased and her fever spiked again. The nurse paged the pediatrician, gave Naomi more morphine, and scrambled to find a form of Tylenol that didn't contain starch or dye. We finally had to hold Naomi down while we placed two Tylenol suppositories. Eventually Naomi quieted and settled to watching a movie. Around 2:00pm the pediatrician finally came to see Naomi. After seeing her miserable state with his own eyes and finding her quite tender in the back and abdomen, he decided to start her on IV antibiotics, even though the source of infection could not be identified. We also decided to run a CT scan on her back, even though it would yield less information than an MRI, since it would not require sedation or long periods of stillness.

Naomi was extremely thirsty by this point, but I explained that it was her own lack of cooperation with the MRI that caused us to have to run the CT scan and kept her from being able to drink water. She was remorseful then, and promised to try her best to cooperate with the CT scan. Just as I was hopeful that this scan would run smoothly Naomi started clawing at her head. "Mommy!" she whined, "My head itches really bad all over!" Within a minute or so her scalp, face, chest, and arms were covered in a raised red rash. I called the nurse who immediately stopped the antibiotics through the IV and ran to page the doctor and grab a dose of Benedryl. It was five minutes before the Benedryl was in the IV and would take another twenty minutes or so to stop the itch. To my dismay, the CT techs arrived and wheeled Naomi back downstairs while she was still miserable from itching. Vancomycin was added to Naomi's ever-growing drug allergy list.

Naomi cried on her way to CT. She was so tired, so thirsty, the nausea had returned, and now she was itching all over. She wanted to cooperate with the CT scan, but she was afraid she wouldn't be able to. I was afraid too and wanted to cry with her. With tears in her eyes and a vomit bag beside her, Naomi was transferred to the CT scan bed, and I was forced to leave the room since the radiation from a CT scan is unsafe for my pregnancy. Thankfully, Naomi completed the CT scan well and good pictures were obtained. By the time we were back in our room again her itching had stopped, her fever had dropped, and she was able to fall asleep.

Only at this point did I finally feel safe in leaving her side to get food for myself. In 24 hours the only nourishment I had taken in was water and two cans of Sprite that I had drunk while out of sight of Naomi. I informed the nurse I was leaving and asked her not to give any medications to Naomi while I was gone. I quickly scooped up a chicken sandwich and some fruit and cheese from the cafeteria and hurried back to the room. Naomi was still sound asleep so I sat beside her and quietly chewed and breathed a long sigh of relief.

Around 5:00pm the doctor called to say that the CT scan had not shown any signs of abscess, but it could have possibly missed a small one. The scan, however, did show a thickened bladder wall which could be consistent with irritation or inflammation from a urinary tract infection. Since Naomi's lower abdomen had also been tender the pediatrician proposed that we were probably dealing with a UTI, even though her urine had not shown clear signs of that. He switched the IV antibiotics to Rocephin and said he'd see us in the morning to examine Naomi and talk about the results of the urine culture.

Around 9:00pm Naomi finally turned a corner. Her fever had stayed down now for about five hours, her pain lessened, and she was allowed to drink water, but I wasn't comfortable leaving her in the nurses' care yet. Matt drove home from his job training to stay the night with her in the hospital so I could head home to get some real food and sleep.

Hannah, Emma, and Toby had had a happy day with their Grandpa Eby, and a happy evening with a friend from church watching them. It was nearly 10:00pm when I arrived home. Toby attacked me in a hug, then decided to whine for a cookie, and throw a fit when he was denied. Hannah simultaneously bumped her leg and began crying for a kiss. A quick bed-time followed for them and I collapsed in my bed shortly after that.

Matt didn't get much sleep at the hospital. Naomi's four-hour evening nap had refreshed her and her water bottle that she uses at night cracked and began leaking. Naomi decided to wake Matt hourly to ask for drinks of water. The nurse attempted to help by offering to let Naomi watch TV at 2:00am, a suggestion which Matt didn't find helpful in the least. He wearily headed back to training at 7:00am, and was surprised that he had caused quite a stir by disappearing from the hotel the night before. He wasn't in trouble, but he had a lot of people worried about his safety or the health of his hospitalized daughter.

Naomi was much brighter when I joined her Thursday morning. Her fever had not returned. I was finally able to coax her to sit up, and she was surprised to find that it didn't worsen her headache any. We eventually brushed out her tangled mass of hair and gave her a can of ginger ale to sip. The pediatrician came by our room around noon and we spoke about the possibility of discharging her that afternoon, but the urine culture had come back negative, making it unlikely that the infection had been a UTI. In addition, Naomi's back and abdomen were still quite sore, especially when he pressed beside her spine at the level of the spinal tap. We decided that it was possible the infection was a small abscess in her spine that was responding to antibiotic treatment, and that discharge that afternoon may be premature. He wanted to keep her on the IV antibiotics until Friday morning, and to see if anything eventually grew in the blood or urine cultures and if her back stopped hurting.

Naomi spent the day happily watching a pile of movies. She eventually regained a decent appetite and I was comfortable leaving her for a few hours to take care of some things at home. I left her in the care of the night nurse for the night as well, who called out as I left, "We're just going to be having pizza and partying tonight, don't worry!" I dreamed last night that the nurse had indeed served Naomi cheese pizza with full servings of dairy and gluten, and I was giving that nurse a piece of my mind when my alarm clock went off.

Instead, I found that Naomi had slept well and was just waking up as I entered the room this morning. The doctor came by around 9:00am and said that we would be discharged this morning even though Naomi's back is still sore, pending results of the blood culture. We've now been waiting two hours for the lab to get a 48 hour report on the blood culture to the doctor so that we can go home.

It is good to have a healthy, happy daughter again and to know we may all be home as a family tonight, but I'm not letting my guard down too quickly. There is always the possibility that the infection was not completely wiped out by 48 hours of IV antibiotics and that it may return, whatever it was. Tonight I will celebrate and rest, but it will be hard to truly relax until Naomi is really pain free and at least a week has passed without signs of infection. I just hope we're all truly healthy and settled before this new baby comes--less than 10 weeks to go until that saga begins.

The Infection (part 1)

2011-09-29T20:59:00.000-04:00

This week was Matt's second week of training for a new job near our house. Unfortunately, the first three weeks of training are at a city an hour and a half away from our house. By Tuesday morning, one week after Naomi was discharged from the children's hospital, I was finally feeling rested and caught up enough on chores to take the kids to visit Matt. Naomi had continued to have a mild headache and backache and I had continued to give her prescription pain medication as needed, but I was confident she was nearly recovered.

Excitement built as I packed the kids' dinner and swimsuits for a fun family night at Matt's hotel. At 4:00pm I loaded all our bags in the car and strapped Toby securely in his car seat. I called back to the girls in the house to hurry out to the car. Naomi appeared in the doorway holding her head and mumbling to me. Leaving Toby, I walked to the door and asked her to repeat herself. "Mommy, my head aches really bad again," she complained. I paused a moment, then decided to give her another dose of pain medication and load her in the van. We'd been dealing with headaches for two weeks now and neither she nor I wanted it to spoil our evening.

Naomi's headache responded so well to the medication that neither she nor I remembered to tell Matt about it when we got to the hotel. The hugs and excitement swept us into the hotel room and carried us through the evening. Thinking back now, I realize that Naomi ate little dinner, and wasn't very active in the swimming pool, but her quiet smile hid her discomfort well. After changing everyone into pajamas I suggested that Matt take the kids to the lounge and pop some popcorn while I collected the wet towels and swimsuits.

"Mommy!" Naomi suddenly burst out, "My tummy hurts really bad now! I feel like I'm going to throw up, and my headache is back too!" She tried to follow Matt to the lounge, but quickly retreated to the bed and lay shivering under a pile of covers. "I feel really sick, Mommy. I'm so cold!" she whimpered. Matt and I felt helpless. I had no medication with me to give her and I was confident she'd vomit it back up anyway. She was clearly too sick to ride an hour and a half sitting up in a car seat on the way home. I briefly considered taking her to the local ER, but quickly realized that it would be impossible for Matt to watch the other three kids in his hotel room all night. Naomi did not want to move from the hotel bed, but staying there didn't help her at all. It was a difficult decision to make, but Matt finally carried Naomi to the van and we strapped her into the front passenger seat with the seat fully reclined. We tucked two blankets in around her and buckled her in as well as we could, then put the other three kids in their seats.

I called my parents for advice, then called Matt's Mom to ask if she could meet me at home. Thankfully, Naomi slept most of the way. I kept remembering as I drove how the doctors had said the previous week that they would be much more concerned about Naomi's back pain if she were running a fever. Matt's Mom was waiting when I pulled in our drive. I let her and the other kids into the house and ran back to the van with a thermometer. Naomi shivered while I took her temperature. It was 103 degrees. I quickly packed a few things, said good-bye to the others and drove Naomi to our local ER.

It was a long five hours in the ER from 10:00pm to 3:00am. Normally docile and compliant, Naomi was in no mood to be messed with that night. It took four nurses to hold her down while they drew blood and placed an IV. "It would have been better to stay at home!!" she screamed with all her might, and I knew that it was hopeless to try to convince her otherwise. She was beyond rationality. I just stroked her hair and sang quietly until the nurses left and she calmed down. I was depleted as well after hours of preparation, driving, swimming, and driving again. I ached to sleep, but that wasn't an option.

At 1:00am the ER doctor reported that the initial lab work didn't indicate infection. "It's most likely viral, so I'm comfortable sending her home. Do you have any questions?" he rattled off mindlessly. I knew viral illness was a possibility, but what in the world was I going to do with Naomi at home? Even on IV anti-nausea meds and morphine she was wide awake and miserable.

"Well," I stalled, trying to think clearly, "Naomi's had ongoing headache and back pain for two weeks now--long after she should have healed from the spinal tap. When we were at the children's hospital they told me that they'd be much more worried about her back pain if she had a fever. So, now that she has a fever I'm pretty concerned. I want to be sure she doesn't have an abscess or something in her spine."

The doctor's demeanor immediately changed. "Oh, I wasn't aware of that history," he quickly back-tracked, even though this history had been clearly given to at least two nurses. "Yes, I think we should order a CT scan then, I'll be right back."

...and now, I have to go to bed for the night...I'll continue this saga with part 2 tomorrow...

Joining the Song

2011-09-26T16:38:00.000-04:00

Some thoughts from our stay at the Children's Hospital last week:

Beside me sits a little boy, maybe six or seven years old, in a wheelchair. His dusty blond hair is shaved close and his head is wrapped in layers of gauze. His left arm is casted and rests in a sling. His legs, covered in bruises, cannot hide under his short hospital gown. His right arm is wrapped in a foam pad that protects his IV site, but he has no trouble using this arm to shake his maraca to the guitar's beat. Incredibly, his face is smiling brightly. The boy's father sits beside him, smiling at his son, but the father's smile is guarded and weary. I wonder how long it's been since the accident and how long it has been since the father has slept.

Beside them sits another family: a young mother and father with their four-year-old daughter, "Kelsey." I know this family. We met on the elevator yesterday. I had joked about the pile of movies on Kelsey's lap as she rode in her wheelchair. "We've watched about every movie in the library," her mom sighed, "we've been here for over three months." She freely told their story. Kelsey had been born with a hidden birth defect: a weak stomach that caused no problems until it suddenly burst one summer day and sent Kelsey into septic shock. She had nearly died and only recently was well enough to be up and about in her wheelchair. "We're hoping to go home in another four or five months," the mother cheerily summed up. Today Kelsey also smiles and beats the lollipop drum on her lap. I wonder if she even remembers her home or how it felt to swing on a swing or slide down a slide.

Next in our circle are two girls, each with a parent and an IV pole beside them, but like my daughter, it is not readily apparent why they are here. "Jesse" is reclined in his special-needs wheelchair on the other side of me. He has only a nurse to help him beat a drum, but with his eyes to the ceiling and his tongue protruding he beats his drum and laughs. I am surprised when he laughs. I had assumed from his blank expression that his emotions were blank as well, but as he beats harder and laughs harder I realize how wrong I had been. I wish his parents were there to see him laugh.

The lady with the guitar sings softly and we play our instruments softly. She sings loudly and the whole ninth floor of that children's hospital is brought to life with maracas and drums and laughing sick children. I didn't choose to be in that room today. I want to be home with my other children. I want my daughter to be able to walk without pain today. A nurse sees my sad eyes as I look around that circle and leans close to me to say, "That's the thing about working here I guess. I realize that no matter how bad things are they could always be worse." She is right, but I am gripped by more: if Jesse and Kelsey and the boy from the accident can beat a drum and shake a maraca and smile, I have no reason not to join in the song.

Upheld: Pictures of Naomi's Hospital Journey

2011-09-19T15:54:00.000-04:00

Naomi has been hospitalized for four days now. She's had some very painful and trying times, but some bright spots as well. Here are the pictures I've snapped of our journey.

Naomi working on Lite Bright Saturday afternoon

Being transferred to the ambulance Sunday morning

Off to the Children's Hospital, where we sat in the ER for 8 hours before being admitted!

In our room this morning (with a pillow pet they gave Naomi) she was finally able to sit up!

Sitting up again and a few more pictures of our 5 star room in a brand new facility.

Naomi's TV and our in-room refrigerator

This is my corner with my own bed, desk, and my own TV

Naomi even felt well enough to visit the playroom and do some artwork

Since Naomi was sitting up on her own without a headache, the blood patch was cancelled this morning. Now Naomi is simply being observed until tomorrow morning to make sure she can tolerate being up and about normally without the spinal headache recurring. Her back is still sore, but not quite as frozen as it was last week. Hopefully her back will loosen up, her headache will not return, and we'll be on our way home tomorrow. Thank you all for continually upholding us in prayer.

The Brighter Side of the Hospital

2011-09-17T12:23:00.000-04:00

A daughter in the hospital for days on end? That's the last thing I need right now...or maybe it's not so bad.

Yesterday evening I drove home for a few hours so I could eat and catch up on chores while Matt got a chance to visit Naomi. I was glad to be home...for about five minutes while I ate and hugged Toby. Then it began. I put away the dinner leftovers that a friend had graciously brought us, loaded and ran the dishwasher, started the girls cleaning up their mess, and went down to the basement to throw in a load of laundry. Just a few minutes later Hannah came running down the stairs yelling, "Toby's in so, so, sooooo much trouble! He broke the mirror in your room and he's playing with the glass!" That got my heart pumping.

Toby was now downstairs quietly looking at his hands, which were both covered in blood. He looked at me and back at his hands, but he didn't dare complain. I ran him to the sink and washed his hands and was relieved to see only two small cuts on his fingers. After being bandaged up I left him strapped into his booster seat in the kitchen, screaming, and I felt zero sympathy for his plight.

The mirror had been given to us by Matt's parents last week as part of a dresser and desk set that Matt had owned when he was young. I thought the mirror would be safer and more useful on the wall in our bedroom than on the back of the dresser in the kids' room. I had moved it to our bedroom and left it against the wall, but hadn't found a chance to hang it up yet (somehow, it's been a busy week). Toby had found the mirror in my bedroom, tipped it down on the floor and, judging from the bent-out back, had probably stepped or jumped on it until it shattered. I removed all the little pieces of glass to the dumpster and vacuumed the room thoroughly, all while Toby screamed and screamed.

"Mommy! Can I get out my boo-seat!" he wailed. "I be a good boy!" But, after lecturing and releasing the prisoner he did not live up to his promise of good behavior. I returned to the basement to finish the laundry and he immediately pulled a chair over to the basement door, closed it, and slid the barrel bolt in place, locking me in the basement! He was not malicious in his intent, he is just Curious George incarnate. He soon realized that he had locked himself away from his own mother and began screaming again and banging on the door, "Mommy! Mommy! I lock the door! Mommy!" I just shook my head and went right on with the laundry. At least I knew where he was, and he did figure out how to open the door again by the time I was ready to come back upstairs.

I tucked the kids in bed, finished the laundry, packed my bags, and couldn't wait to get back to the peace and stillness of the hospital. Amazingly, I slept fairly well in the recliner in Naomi's room, other than the three times she woke screaming in pain because they kept wanting to sit the head of the bed up. I was armed now with clean clothes and snacks to last me a few days. When Naomi slept most of the morning I ordered her a breakfast tray, but then couldn't let it go to waste, of course, and had to eat it myself. Shhhh! In Naomi's words, "They sure do cook good around here."

When I called my mom to see how things were going at the house this morning, she attempted to update me, but had a hard time finishing a sentence without having to yell something at Toby. "Boy, he doesn't miss a beat in the morning, does he?" she observed. But my morning was quiet. It is now my full-time job to keep my daughter comfortable, watch movies with her, read books to her, and keep our family and friends updated on her condition. Of course, I want more than anything for her to feel better quickly and for us to all be home together again...but a little peace and quiet in the hospital has its upside too.

In the Hospital

2011-09-16T16:56:00.002-04:00

Naomi before her spinal tap last Tuesday

In the ER Wednesday, unable to straighten her back

Yesterday Naomi's backache had lessened, but her headache had become very severe. The back pain that had had her screaming in pain in the ER she had described as an 8 out of 10. The headache she described as a 9! I didn't immediately recognize it as a spinal headache because it was so long after the spinal tap and because laying down didn't immediately relieve her pain. I rushed to get Emma dressed and out to her bus for preschool on time. Then I rushed to frost and pack the cupcakes I was supposed to bring to the preschool for Emma's birthday celebration. Naomi vomited twice, but seemed to feel better.

I asked Naomi if she thought she could tolerate the ride to drop off the cupcakes since Matt was at work and I couldn't leave her home alone. The ride is about five minutes either way so Naomi agreed to try it, but once she was in the car and on the way she was in agony. I was so flustered that I made four wrong turns and managed to change the five minute drive into a ten minute drive. Then I ran the cupcakes into the classroom and explained that I couldn't attend the party and rushed back out to the van. Naomi cried all the way home and vomited again once we were home. I called the neurosurgery office and had them phone a prescription for an anti-nausea med to our pharmacy. A neighbor agreed to sit with the kids while I ran to pick the prescription up, and I almost left before I realized that I had forgotten I needed to pick Emma up from the bus. My mind was in so many places at once it was in danger of making a major mistake. Deep breaths followed while Naomi laid on the couch and watched PBS and I retrieved Emma from her bus.

When I finally did get home with the anti-nausea med I felt a sigh of relief as she swallowed it with just a sip of water. Now, I thought, she'll be able to settle her stomach and then take some pain meds and we'll be comfortable again. Unfortunately, she only vomited up the anti-nausea medicine fifteen minutes later. As the hours of vomiting and pain passed it was very clear that Naomi had a spinal headache from the spinal fluid continuing to leak out the sight of the spinal tap, and only the hospital could really help her out. Naomi, who by now realized that lying down did help the headache, reluctantly agreed that she needed to go back to the hospital, "but, Mommy," she cried, "how will I get there?" When I offered to let her lay down in the van she objected further, "but how will I get into the ER?"

The neurosurgery office agreed to call ahead to the ER to try to expedite the check-in process. My mother-in-law came over after work and helped me load Naomi in my mini-van lying down, then she stayed with the others while I drove carefully to the hospital. I pulled the van up to the ER doors and informed the registration desk that unless someone brought a gurney out to my minivan Naomi would vomit all over their floor. A technician with a gurney promptly met me at my van and lifted Naomi onto the bed. She was wheeled back to a room where a doctor met us within minutes.

Resting comfortably last night in her own room

He confirmed what two other people had told me, that the normal treatment for a spinal headache from a spinal fluid leak was a "blood patch" where some blood is injected over the hole to form a clot and seal the hole shut until it can heal. However, after some phone calls he told me that our local hospitals are not equipped to perform this on a seven year old. Naomi would have to be transferred by ambulance 3 1/2 hours away to the children's hospital if we wanted that procedure done. Add to that that the procedure is not always effective and could start her back muscles spasming again. Some blood work showed that Naomi's kidney function was declining from dehydration, so the decision was made to admit her to the hospital for IV fluids, anti-nausea meds, and pain meds while we decided whether or not to transfer her to the children's hospital to do the blood patch.

One of the medications that Naomi was given through IV was a bag of caffeine, which is apparently effective at lessening the pain of spinal headaches. It did lessen her pain, but it also effectively wired her until five in the morning! Multiple doctors also tried to give Naomi NSAIDs like Motrin, Ibuprofen, and Excedrin, and I had to keep informing them that she's not allowed to take these medications because of her kidney disease. Instead we ended up with a little more morphine as needed. We were settled into our room around 8:00pm, had a visit from our pastor and his wife, and then Matt came to join Naomi for the night while I went home to rest.

It was hard to get too much rest while caring for my other children, who were obviously feeling the stress of this week themselves. Hannah, who has never once wet her bed, woke up soaking wet and crying in the middle of the night. Not long after that was cleaned up Toby came screaming into my room and was so happy to find me there he insisted on sleeping beside me for the rest of the night. This morning, when I needed to return to the hospital he told me, "That makes me sad," but he seemed to understand that Naomi needed me to be with her and he didn't fuss when I left.

Watching "Black Beauty" this morning...and waiting

Naomi's pediatrician visited our room and agreed to call every anesthesiologist in the area to see if anyone would perform the blood patch on Naomi, but after two hours of phone calls no one was willing because of Naomi's age. We then decided to transfer Naomi to the children's hospital, but after another few hours of waiting those plans were changed. The neurosurgeon who had done Naomi's spinal tap was out of town and his partner relied on the procedure notes that said the tap had gone easily. She insisted that Naomi shouldn't be suffering from a spinal headache since the tap was uncomplicated. She convinced the pediatrician that Naomi should continue to be treated conservatively in the local hospital for a few more days. So now we are stuck in the hospital relying on IV medications to keep Naomi comfortable while we hope that hole in the spinal column heals on its own. If by Sunday no significant improvement is seen, then Naomi will be transferred that night and the blood patch will be performed Monday morning.

My mom is driving out today to help out, but it could be a long haul until we are comfortable at home again. Naomi was just infused with another 500mg of caffeine, so there's not much rest for anyone in the next day's forecast. I'll keep you updated.

The MRI and the ER, a Spinal Tap Update

2011-09-14T17:25:00.000-04:00

Emma's MRI this morning went off without a hitch other than the sedatives turned her into a drunken sailor for several hours afterward. Drunken, but happy and very funny to watch, which is much preferable to the angry ball of slobberous fury that Toby was for five hours after his MRI last fall.

Naomi initially woke feeling slightly improved this morning. She was able to walk down the stairs and use the bathroom by herself, but within an hour the severe pain had returned. Matt had already left for work so our family friend dosed Naomi her Tylenol with Codeine and a cup of juice as my written instructions had asked her to do. Unfortunately, with no real food in her stomach, the medicine simply came up again within a half-hour. Thankfully, Naomi had a barf bowl beside her bed left from a night she was feeling queasy awhile back, and she grabbed that just in time.

By the time I made it home Naomi was in excruciating pain. She was literally writhing, trying to find any comfortable position. Her eyes were dark and puffy, her face tear-streaked, and she said she was having trouble using the bathroom. At that point I decided that a doctor needed to see her in pain in order to get her effective treatment. Thankfully, my friend volunteered to put her other plans on hold this afternoon. She stayed and tended to Toby, Hannah, and drunken Emma while I took Naomi to the ER.

Naomi winced and cried as she made her way to the van, bent over at a 90 degree angle. She stayed bent as far forward as possible in her car seat and in the wheelchair, but her honest pain helped us get effective treatment more quickly. After the doctor observed her try to walk and listened to her describe and rate her pain she ordered initial IV fluids and some benedryl while she consulted with the neurosurgeon from the children's hospital. When the benedryl made Naomi extremely drowsy, but she could find no comfortable position to sleep in Naomi finally lost her composure. She melted in sobs and screams that probably scared the entire ER ward. I sat beside her and wrapped my arms gently around her and told her it was OK to cry. So cry she did, with no inhibition, like I've never heard her cry before. Her nurse tried to offer suggestions, but Naomi wasn't taking anyone's advice. Finally the nurse brought three extra pillows and we were able to prop Naomi, sitting with her legs crossed, leaning forward on three pillows on her lap. I sang her a few songs and she dropped sound to sleep for about fifteen minutes, with her face in the pillow in front of her.

I snuck in a much needed snack break and a few phone calls before Naomi woke and cried that she just wanted to go home. I assured her that the doctor would give her some real pain medicine as soon as the two doctors had decided what to do. It took three hours total in the ER before it was decided by all tests and exams and consultations that Naomi was not suffering from neurological damage, but muscle pain, and that the appropriate treatment was heavy duty pain meds. Fortunately, those three hours gave the doctor plenty of time to see and hear that Naomi was indeed in serious pain that needed serious treatment.

Naomi was given a dose of morphine through her IV, which brought her pain down from an 8/10 to a 5/10 in one hour. She was still unwilling to move at all, so she was given a second dose of morphine which finally brought her pain to a 3/10 and Naomi was able to straighten her back a little bit and began to smile and talk to those around her. We were discharged with some strong prescriptions for Vicadin and Valium and instructed to try one and if it didn't work, to wait until the dose wore off and then try the other. Hopefully one of the meds will continue to control her pain well until her back can heal from whatever is ailing it.

We are now at home. Naomi can get up and walk cautiously with her back bent only part-way over. She happily ate a snack and is on the couch coloring pictures. She is clearly still in some pain, but is chatty again--chatty enough to boss her siblings around again too, which is always a sign of health. I just hope we don't have too many days of narcotics and sedatives ahead of us before she recovers.

The Medical Marathon, and a Spinal Tap Gone Wrong

2011-09-13T21:56:00.000-04:00

I knew when the neurosurgeon scheduled Naomi's spinal tap on the day in between an ultrasound for me and an MRI for Emma it was going to be a long week. Thankfully, friends from church have lined up to watch the other kids for me each day and even to bring me an evening meal. I don't know what I would do without their help.

The ultrasound yesterday confirmed that our next baby still looks completely healthy, and is growing a little above average on the charts. This was wonderful news which was unfortunately eclipsed by the phone call I received not five minutes later. I had planned Naomi's spinal tap today for a 9am arrival at the children's hospital, which would've required that we leave home at the reasonable hour of 5am. But the nurse on the phone informed me rather abruptly that the surgeon had had a schedule change and they would now need Naomi to arrive at 5:45am! Since leaving at 2:00am and driving nearly four hours through the night when I am six months pregnant was not an option, I spent the afternoon yesterday finding and booking a hotel for Naomi and I to stay at. When I had ironed out the details of childcare for today and Matt arrived home to watch the other kids, Naomi and I headed out on the long drive, arriving at our hotel by 10:30pm.

I gave Naomi about 10 minutes to savor the new experience of sleeping in a hotel and then we turned out the lights with two alarms set for 4:45am. We checked out at 5:15am and arrived at Day Surgery Registration promptly at 5:45am only to wait nearly a half hour for our turn to check in. The rest of the hospital was dark and deserted but Day Surgery was alive and writhing with hungry, tired, fearful, and cranky children. A toddler girl wrapped in a towel clung to her mother like a baby chimpanzee. A baby with a cleft palate and a tracheotomy fussed in his car seat. Another girl with wandering, unseeing eyes cried for her bottle and refused her mother's calm explanation of "nothing by mouth for six hours prior to check-in." Naomi didn't complain of hunger or thirst, though I am sure she felt it as well. She is used to this routine.

When we were finally given our child-friendly cubicle we again sat for nearly an hour until a nurse came to check Naomi's vital signs. I slumped in my chair and tried to rest and imagined how much I would have liked to sleep that extra hour and a half. Finally, I had answered the long list of usual questions, signed all the consent forms, and shaken hands with the anesthesiologist. Naomi calmly followed the nurse back to the OR, and I headed straight to the hospital's in-house McDonald's for a dollar-menu breakfast. Forty-five minutes later the surgeon met me in the waiting area and told me the tap had gone without incident and that we'd have results in a few more days. I then joined Naomi for two hours of lying flat in the recovery area in order to prevent a spinal headache while the pressure in her cerebrospinal fluid equalized again. I read her a book, we watched some cartoons, and I tried again to doze upright in a hard chair. Finally, Naomi was allowed to sit up and dress. Her IV and monitors were removed, and we were on our way home by 10:30am.

I was thinking about how smoothly everything had gone with the procedure and how early we would be arriving home, and how I might even steal a little nap before Toby woke up. Silly me. An hour and a half into our drive home I pulled off at a gas station and told Naomi to hop out of the car for a potty stop. She was tired but otherwise pain-free, until she tried to stand up. She winced in pain and cried, "Mommy! It hurts to stand up. I can't stand up, my back hurts too much!" Her lower back and rear end were obviously in intense pain and she refused to straighten her back at all. I asked her to try walking, hoping her back just needed to loosen up a bit. She hobbled into the gas station bent over at almost a 90 degree angle with tears running down her face and painfully completed the bathroom break. Once she was back in her car seat she was again completely pain free. As I continued driving I called the hospital, who paged the neurosurgeon. He was surprised and a bit perplexed by Naomi's unusual complaint, but he was reassured that she hadn't lost any ability to move her legs or use the bathroom. He told us to push to make it home, and have her rest there, but to take her to an ER if she began to actually lose the use of her lower limbs.

While I knew paralysis was an extremely remote possibility, I nervously glanced back at Naomi every few minutes as I pushed the speed-limit on our way home. She sat calmly reading her Highlights magazine and swinging her legs, kicking them together every now and then, and this reassured me as I drove. We had to make one more rest stop an hour later and Naomi again cried and hobbled all hunched-over through the crowd at the gas station. I have no clue what the staring people thought of my hunch-backed sobbing child, I don't know what I would have thought. I tried to crack jokes to Naomi about how silly she looked, but she was in no mood to be consoled today. I smiled confidently at the cashier who looked like he was ready to call an ambulance for us, and we finally made it back to the car. One more hour and we were home.

Naomi hobbled inside, but found she could not lay down at all. Instead she sat, half-propped sideways at the end of the couch. Awhile later she could not find any position at all which would relieve her pain. I called the hospital again and wearily waited another hour for the doctor to call back. He was still perplexed, but after reviewing her symptoms he was confident that Naomi was suffering from muscle soreness and not nerve damage. He phoned a prescription in for Tylenol with Codeine and told me to call tomorrow if she wasn't at all improved.

It has been a long, weary night for us. Naomi's back only seems to hurt worse and worse. The Tylenol with Codeine has not helped one bit. Matt gave her a massage and I warmed up a heat-pack for her and these seemed to help some. This seems to support the theory that we're dealing with some seriously cramping or spasming muscles. Naomi cannot stand, cannot lie down, cannot use the bathroom without two people's assistance. Her eyes are puffy and bloodshot from crying and from fatigue. I just tucked her in bed, propped on an enormous pile of pillows that keep her almost sitting upright, and I believe she is finally asleep.

Tomorrow I wake up early to take Emma for a brain MRI. This means neither Matt nor I will be able to be with Naomi if she is still in pain. Thankfully, the friend who is coming to watch the kids is a Certified Nurses Assistant, so she should be as qualified to help Naomi as anyone until I can return. If things do not improve we may end up taking Naomi to the local ER for evaluation tomorrow. The surgeon even mentioned transferring her to the children's hospital if needed. This is very unlikely, but still, these scary possibilities tend to haunt me as I watch her cry hour after hour.

Please pray for Naomi's back to heal quickly. Pray for Emma's MRI to go without incident tomorrow. Pray for rest for my family. Thank you.

MRI Update on Naomi's Pineal Gland Mass

2011-09-02T19:37:00.000-04:00

I am so exhausted tonight I will have to be less eloquent and wordy than usual, but I wanted to post this report for those who are following the health concerns in our family.

I was up at 3:00am after only a few hours of restless sleep and out the door with Naomi by 3:30am. The air was muggy and warm, but traffic was light and our three-and-a-half hour drive to the children's hospital was quiet and uneventful. We checked in just after 7:00am, and Naomi was put under anesthesia and wheeled into MRI by 8:00am. We were rechecking what the neurosurgeon suspected was a cyst in Naomi's pineal gland (an endocrine gland in the brain). The cyst has caused no problems so far, except to suppress her melatonin production, which causes her trouble sleeping. We give her a melatonin supplement each night before bed to help her fall asleep.

I actually laid down on a bench in the waiting room and fell asleep while Naomi was in the MRI. I'm sure I looked utterly ridiculous, but that power nap provided me the extra fuel to safely drive home. Naomi woke happily from anesthesia, as she usually does, and we were up to the neurosurgeon's office for consultation by 10:30am.

The neurosurgeon first gave us the good news: the mass has not grown at all or changed shape, it is still not compressing the nearby aqueduct or causing hydrocephalus, and Naomi still shows no sign of it affecting her neurologically--all excellent news. The downside was that they used a dye contrast for this MRI (they hadn't used it for the last one), and the mass showed a distinct highlighted ring around the edge of it, with some fuzziness in the middle. He said this was not at all a typical appearance for a cyst and was unclear as to what it meant. We then waited over an hour while he consulted with the radiologist and his neurosurgeon partner. Finally, the three of them agreed that while the mass is certainly behaving like a cyst and not "something bad," it doesn't really appear to be a typical cyst and that we need to take a cautious approach with it, just to be sure.

The cautious approach means this: we will return to the children's hospital on Sept. 13th so that Naomi can undergo a spinal tap to look for levels of hormones in the spinal fluid that would indicate a tumor rather than a cyst. If these hormones show up the neurosurgeon felt that biopsy of this area of the brain is too risky and we would simply proceed with radiation treatments. He was emphatic that he does not expect this to be the case, but that we are just being extra thorough. If the spinal fluid does not show the worrisome hormones then we will repeat the MRI in six months.

Thankfully, they will put Naomi under anesthesia again for the spinal tap so she will not endure any pain, but she will have to lay down in recovery for several hours to prevent her from getting a spinal headache. It will certainly be another all-day event. The next day I have to wake early to take Emma to the next town over for her repeat brain MRI.

Please pray for smooth procedures, for good results, for rest for me. Thank you all for your prayers.

Keeping Track of Mommy

2011-08-31T20:45:00.000-04:00

Several weeks ago I spent the afternoon at a busy new playground with my kids. The playground was so large and so full of children that it was all I could do to try to keep a headcount on all four children. I spent the day saying, "There's Toby...and there's Naomi and Hannah...now, where's Emma? Oh, OK, there's Emma. Now where did Toby go?" Over and over I counted their heads, or their shoes or shirt or whatever body part I could see across the equipment and through the crowds of children.

On one round through their names I was hung-up for a few seconds longer than normal looking for Emma, and by the time I spied her in a tunnel and went back to looking for Toby he had completely vanished. I spent ten seconds more scanning the equipment, then called out to Naomi and Hannah, but they hadn't seen him either. After he'd been missing about thirty seconds my heart began to race. I walked quickly around the entire playground, but he was nowhere. I hurriedly scanned the trees surrounding the park, and finally spotted him wandering off among the trees and down a hill. He was whimpering to himself, "Mommy! Mommy, Mom-my!" When I called out to him and he saw me a huge grin crossed his face. He came running at full speed and threw his arms around me.

"Toby," I scolded him, "You can't leave the playground! Mommy will not leave without you. If you can't find me you stay at the playground, but do not leave Mommy!" He sat with me on a bench for awhile, then asked to play again, and so I gave him the speech once more. "Yes, you may play, but stay where you can see me. Don't leave Mommy!" He agreed, and obeyed, and now I wish I had put an expiration date on that directive, because two weeks later he still won't let me leave his sight.

This incident has touched off a whole new round of separation anxiety that he hasn't felt since he was a tiny toddler. Toby now refuses to attend his Sunday School class and he pouts at being left in the nursery. He is upset and nervous if he suddenly can't see me in the house, and melts in fear if I should leave him with Matt to go shopping. On Matt's last day off I left for less than two hours for a doctor's appointment. Toby was so insecure that he sat on a folding chair beside Matt in Matt's office almost the entire time, including when he should have gotten up to use the bathroom. Matt was less than thrilled with the puddle under his pouting son.

Toby's fear of losing me is gradually diminishing, but he was worried again last night when I told him that I wouldn't be home when he woke in the morning. I needed to leave at 6:00am to go for a fasting gestational diabetes screening, and a family friend whom Toby knows well would be here when the kids woke up. "Toby, I have to go to the doctor in the morning, but I will come home again for lunch," I said cheerily, then reassured him again, "Mommy always comes home."

His lower lip snuck out a little, but I didn't realize how upset he was until he woke crying at 3:00am this morning. When I went in to console him, his hand reached out and caught mine in the dark. "Mommy," he whimpered, "make sure you don't go to the doctor."

I laughed a little and gave him an extra-tight hug. "Toby, I'm going to bed right now. You will be fine, I promise." And, I believe to his surprise, he was fine this morning while I was away.

With the last few months of pregnancy closing in, it's time for Toby to stretch his wings again, but it also reminds me that the extra few snuggles of the past two weeks may not ever come again. Maybe one or two more days of clinging to Mommy would be alright.

Held Against My Will...In the Men's Bathroom

2011-08-28T20:10:00.001-04:00

Yes, I was in the men's bathroom at church today. Yes, I knew it was the men's bathroom. No, I didn't want to be there. I was forced.

Mari and I were washing up and loading the dishwasher after fellowship meal when Toby came to me and announced that his pull-up was poopy. "Toby, go tell Daddy," I ordered, spying Matt across the room talking with some friends. I kept rinsing and loading, but Toby wouldn't move.

"No, I want Mommy," he insisted.

"Well then you're going to have to wait, Toby. Mommy's busy," I answered firmly. That'll teach him to be picky, right? A moment later I glanced down to see Toby looking questioningly at his hand, which was covered in poop.

I seized his wrist and drug him over to Matt. "Matt!" I interrupted, "I need a pull-up and wipes now!" Matt instantly realized the gravity of the situation, grabbed Toby by both wrists and held him up in the air.

Matt's friend, however, was skeptical. "So Toby didn't get into the brownies?" he asked.

"Um, no, that's not brownies," I assured him, grabbing the pull-up and wipes and following my husband. "Matt, where are you going?" I asked, fearing his answer.

"Just come in with me, no one's in here," he snapped back, still swinging Toby by his wrists as he pushed open the door to the men's bathroom.

"No one's in there now, but someone might come in," I said, reluctantly kneeling on the floor and wiping Toby down, "and I don't really feel comfortable with that."

Matt rolled his eyes at me as he washed his hands." Clearly, they'll see what's going on and they won't care," he replied.

"Yeah, after they recover from the shock," I countered. "How comfortable would you feel being in the women's bathroom when a woman walked in?"

"I would feel very comfortable!" he insisted.

"Well, great. Next time you're coming in there with me. Now, Toby's all wiped up and I'm leaving. You can put his pull-up on and wash his hands," I retorted.

"Kathy, you're being ridiculous," Matt called out as I left the restroom.

But another greeting entirely met me on the other side of the door. "Hey! What are you doing in there?!" the pastor called out loud enough for the entire room to hear.

And with all eyes on me, I attempted to acquit myself, "My husband forced me against my will! Toby was covered in poop and Matt made me come in with him." But in case there were still lingering doubts in any one's mind, I have recorded the full story here as record of my innocence. And if any of you ladies ever find Matt in the women's restroom, well, I was just returning the favor.

God Gladly Bends

2011-08-27T21:46:00.000-04:00

Rich Mullins wrote a little-known song once for a baby girl named Madeline who was born prematurely and never made it home from the hospital. He insisted that though Madeline was tiny and helpless she was always praying.

Madeline fusses and Madeline laughs
The angels in heaven say, "Hey, look at that!
There's your faith
Mountains will quake"
'Cause God gladly bends
Just to hear Madeline
When she prays

I've always wanted to teach my children that lesson: that God gladly bends to hear them pray. But then life comes in. Right now I'm in the achy-body, fuzzy-headed, short-of-breath phase of pregnancy, and it can be so easy for me to derail from the track of intentional child training. It's strange how God helps us sometimes.

Last Saturday night I hit a low. Matt's car had been out of service for three weeks while we weighed our options for fixing it, which meant I was putting in extra time driving him to and from work on the days I needed our van, and we were putting lots of extra money into the gas tank. Matt was working overtime out of an office that our church lets him use to sell some things on the Internet for a little extra income. And then our dryer broke. Tempted as I was to sink to a frazzled state of self-pity, a strange thing happened. I almost smiled because we've seen over and over in our lives that it's just the times that things look the darkest that God is actually the nearest. He's just getting our attention. And I knew it was time for my girls to learn that lesson.

After attempting to tear the dryer apart and finding myself only unsuccessfully grimy, I herded the kids up the stairs and tucked them in their beds. "Girls," I began, "tonight Mommy's going to change the routine a little. Instead of just thanking God for something tonight I want you each to ask God to help us fix our dryer, and fix Daddy's car, and for a better job for Daddy."

"Why do we all have to pray for the same thing?" Hannah questioned. So I told her the story of the persistent widow, and I told her how much God loves to hear his children lay their needs before him, and how much it honors him when we trust him to provide for us. I told them that I wanted each of them to pray, so that when God answered they could know that God answers Naomi and Hannah and Emma when they pray. Of course we talked, as we often have before, of how God does not grant us everything we ask for, and how he often has better plans than the ones we have, but I felt confident that this evening's circumstances were just an invitation to ask and watch God work. They prayed the most simple, sweet, sincere prayers, and I came downstairs refreshed.

The rest of the story for our dryer was in my post "Mrs. Fix-It." Solving and fixing that problem within three days for $30 was answer to prayer number one. Tuesday night we also got a phone call from the volunteer mechanic clinic that a local church runs once a week. These men were able to fix Matt's car for the cost of parts only--donating their labor, and cutting the cost of repairs down from $1000 to $500. We picked Matt's car up on Wednesday, the answer to prayer number two. And this week Matt has had two phone interviews with The American Red Cross for a job that would be much closer to home and much better paying. He will interview in person for that on Tuesday. Whichever way that interview goes, I had more than enough evidence to present to my girls at bedtime last night.

"Girls, do you remember the prayers you prayed last Saturday night with Mommy?" I asked. "What did you ask God for?"

Naomi smiled and answered, "To help us fix the dryer, and fix Daddy's car, and for Daddy to have a better job."

"And do you think God heard you pray?"
"Well, the dryer is working, and so is Daddy's car, and Daddy's talking with some people about a new job," she summed up.

"Naomi, don't ever forget that," I said, "God loves to hear you pray."

Naomi reads "The Secret Garden"

2011-08-24T13:28:00.000-04:00

When she found Hannah looking at "The Secret Garden," Naomi offered to read it aloud to her sister, even though she's read it two times before. Naomi is only seven years old and just beginning 2nd grade, but she has no trouble reading this book. If only I could get her to slow down and use a little more inflection.

Mrs. Fix-It

2011-08-21T19:48:00.000-04:00

Last night Matt was away for the evening, but I had it all under control. Feeling more ambitious than usual I bathed the kids, scrubbed the kitchen, and vacuumed the house. I just needed to grab a load of laundry from the basement before I tucked the kids in bed.

I furrowed my brow and stared at the mostly wet laundry inside the dryer. I knew I had started that load last night before bed. A few of the clothes on top of the pile were dry, but underneath was a wet mass. I shrugged, reset the dial, started the machine up again, and turned to go up the stairs. Just at the bottom of the stairs it occurred to me that the motor was running, but the dryer wasn't tumbling. I opened the dryer door and checked: warm air, motor sound, but no movement. Then I did what any sensible person would do: spun the drum around by hand a few times, then lifted the machine up by an inch in front and let it slam back down to the floor a couple times. When that failed to make the drum turn I had only one option. I called my dad.

"I only spent $100 for it on Craig's List anyway," I reminded my dad. "Maybe I just need to get back on Craig's List and try my luck again."

"Well..." my dad thought out loud, "If there's warm air and it sounds like the motor's running it might be something simple to fix like a belt. That squeaking noise it's been making tells me the belt might have broken. Why don't you just take the back off and see if you can see the belt?"

Aren't those just famous last words? "Why don't you just...?" Now how hard could that be? Just pop a couple screws out and look. Sure Dad, no problem.

The back, however, was not secured by a few screws, but by nine tiny hex-bolts, and my ratchet set was missing. I fumbled with a mini crescent wrench while pinching the phone between my ear and shoulder. Toby busily worked beside me picking up the bolts as I set them down, and sticking a Philip's screwdriver through every slot he could find on the back of the machine. The bolts on the bottom presented a peculiar challenge as being six months pregnant renders it impossible to bend at the waist anymore. I ended up sitting on the filthy basement floor in a pile of lint and spider webs, but I finally got that stubborn back off.

Unfortunately, this profited me very little, since the dryer was apparently not supposed to be serviced from the back. I had gained access to the gas heat shield, the lint-trap shoot, and a mass of lint-covered wires, but no drum or belt was visible. I was about to give up when I remembered that the top had come loose when I was lifting the dryer up and slamming it on the floor. "I think the top flips open, actually, Dad," I said. "Maybe I can see from there." With two more screws removed I was able to flip the top up, but I had a hard time determining if the belt was around the drum since I have never seen a dryer belt before.

About this time I was completely covered in grime and Toby stepped on my last nerve when he climbed on top on a laundry basket, fell off, grabbed my shirt for support, and ripped the ties off the back of my shirt. I was dirty, defeated, had three itchy spider bites, and was ready to find myself a new dryer on Craig's List.

After a quick story, prayers, and a song, the kids were tucked in bed and my spirit revived enough to try Googling my problem. After twelve or fifteen web-pages I finally found a tutorial on how to replace the belt on my model of dryer. I had been on the right track with opening the top. Only two more bolts held the front of the dryer on. Unfortunately, I didn't realize that a drum full of wet laundry would come sliding out when the front came off.

But with my dryer in four pieces I was finally able to spy the problem. There, on the bottom of the dryer-shell lay a snapped dryer belt, and I was suddenly promoted to "Do-It-Yourself Genius." I called my dad, who congratulated me and instructed me on ordering a new belt. The online tutorial showed me how to reroute the belt, and advised me to also replace the idler pulley, which indeed looks faulty and probably caused the snapped belt.

Tomorrow I'll call the local appliance store to compare prices to the online stores, but one way or another I am only a few short days away from having an operational dryer again for about $30...if I can remember how everything goes back together.

Matt returned about 10:30pm and remarked, "Did you vacuum? Wow, I didn't expect that." That wasn't all he didn't expect.

Acetone Shampoo Removes the Glue

2011-08-18T11:49:00.001-04:00

I set out the juice cups, vitamins, baggies of cereal, and diaper bag on Monday night, but Tuesday morning was still chaos. I was supposed to wash Emma's hair before her procedure that morning, so into the tub she went, still half asleep, for a 60 second bath. We rushed out the door to get Matt to work on time by 9:00am (still down to one vehicle), then found ourselves two towns away with an hour and a half to kill before Emma's appointment. After examining the vacuums, fish tanks, and garden center at Wal-Mart it was finally time to head to the hospital.

We checked in for Emma's 24 hour ambulatory EEG and watched some Sesame Street as we waited for the technician to call us back. She stood silent a moment when she entered the waiting room. "Um...I'm not sure what we're going to do here," she began, "because I can't allow the other children back to the procedure room, and we will need you to be with Emma."

"We've been to other EEGs before and they've always been fine," I countered.

"This is different," she explained, "because the electrodes have to stay on Emma's head for 24 hours, we use a very strong glue. I can't expose the other children to the smell."

I wasn't about to reschedule at that point. "Emma will be fine by herself then. Just hook her up, I'll stay with the others." The technician looked at me with disbelief. "No, really," I assured her, "Not much bothers Emma. She'll be your A+ patient. I promise."

One half-hour later Emma appeared with 17 electrodes super-glued to her head, a white-net stretched over-top of it all, and long blue cord leading to a blue black-pack that carried the EEG computer. "She did awesome!" the technician raved, "such a sweetie!" I had to swallow the "I told you so" that so badly wanted to answer.

"Now the net needs to stay on," the technician advised me, "but she can wear a hat over it if she feels a little self-conscious. We'll see you tomorrow at 10:30."

Even in the halls of a hospital, the stares of each person we passed felt oppressive. I smiled and confidently marched my troops to the seclusion of the nearest restroom. I soon realized that Emma was going to need assistance with keeping the cord and back-pack strings out of the potty for the next day. She itched at the dried glue on her forehead and pouted when I tried to discourage her. "Buh ih huw weh I cos my eyes (but it hurts when I close my eyes)," she whined.

"Emma," Hannah consoled her, "even with that on your head, you still look like Lucy."

Naomi disagreed, "She looks more like she's wearing a Calormin helmet with that thing sticking up in back."

Fortunately Emma napped peacefully on the way home, and played happily once we arrived. The day went quite well from that point actually, except when I hung the back-pack on Emma's chair at dinner and she tried to jump up after dinner and run off without it. That's when we found out just how strong that glue was. I put the back-pack above her head when I tucked her in bed that night to keep the cord away from her neck.

We were up even earlier Wednesday morning to get Matt to work by 8:00am, and had even more time to kill at Wal-Mart. The Disney Princess baseball cap over Emma's head net did little to discourage stares. Just what was hiding under that net? Did that poor little girl just have brain surgery or something? Thankfully Emma was utterly oblivious.

We marched back into the hospital, only to be greeted by a kind lady at B elevators holding a tray of warm, delicious-smelling chocolate-chip cookies. "Oh, here are some customers for me," she smiled, holding the tray out to my children.

"I'm sorry, we can't," I quickly replied, steering the girls away from temptation, "they have Celiac disease. So no wheat cookies for us, but thanks." I tried to keep my voice cheery, but I felt awful as the girls stood quietly on the elevator and watched the cookie lady disappear between the closing doors. "So, Emma," I changed the subject, "are you ready to get that stuff off of your head? That will sure feel good!"

We sat again watching Elmo's World after the technician took Emma back. When they reappeared Emma looked like a child who had recently been rescued from the slums. I hadn't anticipated that Kodak moment. Her hair was twisted and matted with masses of white clumps and tiny white flakes throughout. She looked like a lice-infested dumpster-dwelling child.

"Now, there's still some glue in her hair," the technician explained. Oh really? I thought that was moldy cheese. I contemplated shaving Emma's head, but the tech had a much simpler idea. "Now all you need to do is wash her hair with some acetone-based nail-polish remover..." Oh, is that all? Lovely. "...and if that doesn't work you could try some vegetable oil, sometimes that helps to loosen it." So acetone alone doesn't just eat the hair off of her head? Interesting. Then I get to slather her in vegetable oil? That should be as much fun as chasing the greased pig at the county fair. Anything else? "It's not going to come out by itself, and it will take a few washings..." I'm sure it will. "...and here's a fine-toothed come to help you scrape it out."

"Acetone, vegetable oil, comb. I think I've got it," I replied, trying to smile, as I took the knit-pick from her hand.

I would have gladly traded the sympathetic stares of strangers towards my medically-fragile child, for the horrified, condescending stares towards my neglected lice-infested child. And just how do you explain to every passing stranger that her hair had been washed only 26 hours ago, it was just slathered in super-glue and we were on our way home to bathe her in nail-polish remover? Back to the closest restroom we flew, where I tried to pull the massive rat nest of gluey hair into a pony-tail and tuck it under the Disney Princess baseball hat.

Actually, we couldn't head straight home. Matt was working a short day and it wouldn't have made any sense to drive 45 minutes each way to go home for two hours. Instead we had a picnic at a local park (where I nearly lost Toby twice), and roamed the mall for awhile before picking Matt up, all while being careful not to let the hat slip from Emma's head.

After a quick dinner I locked Emma and myself in the bathroom with the exhaust fan running while Toby pounded on the door. It took a full hour to carefully apply acetone with cotton balls to Emma's entire head and knit-pick out every flake of glue. I didn't end up needing the vegetable oil, thank goodness. Emma didn't really cry as I scraped and tugged at her head, even though she lost half a handful of hair. She whimpered pitifully and sang the word "ow" over and over to the tune of Twinkle, Twinkle, Little Star. But when I put her in the bathtub and washed her hair three times in a row she lost her patience and melted down in sobs. It was a relief to everyone to tuck her in a warm bed with a clean head of hair.

The 24 hour EEG is supposed to give us more detailed information about exactly when and under what circumstances Emma's brain waves are slow, whether the condition has declined at all since last April, and whether there is any minor seizure activity we've missed before. We should get the results in about a week. I'm just hoping the nurse who calls doesn't say, "The doctor would like you to repeat this test in another 6 months."

Reaping

2011-08-15T17:21:00.000-04:00

Today I sit at my computer, watching my girls take turns pushing each other on the swing under the huge walnut tree in our backyard. Hannah eagerly runs toward Naomi, who is pumping with all her might, with her hands outstretched, ready to help push her big sister. Then, as Naomi's body flies back toward Hannah's skinny frame and I prepare to pick up the phone and call the paramedics, Hannah reconsiders and runs from harm's way as fast as her toothpick legs can carry her. I am relieved, and then amused, but more than those I am proud. Good for Hannah! She was really trying to be kind to her sister, and with all the times I have lost my temper in frustration with my children, somehow, by God's grace, I see their little kind, loving hearts shining through more each day.

This morning I woke up to find that Naomi had already poured out the morning's juice for each of her siblings and set our their multi-vitamin pills for them to take, as I have done first thing each morning for seven years. She carefully climbed the stairs and grinned from ear to ear as she brought my juice glass and prenatal vitamin to me in bed. "Mommy, I poured the juices for everyone already! Here you go!" she announced with pride. And, even though I had trouble opening the refrigerator door because of the enormous juice puddle that had dried and sealed it shut, I was proud of her too. When she went around the house a week ago opening all the mini blinds for me, but pulled so hard on one that she broke the top rail in half, I tried to swallow that $3.96 loss with grace. She was trying to help, and that is exactly what I need.

The girls complete their chores of laundry folding and dishwasher emptying most mornings now without complaint, and sometimes without even needing to be told. The pile of bath towels sits askew from lop-sided folding, and my plastic food storage containers are often sealed together because a pair of little hands forgot to dry them before nesting them together, but I am proud none-the-less.

Today at nap time I filled Toby's sippy-cup with milk and turned him over to Hannah, who gently led her little brother upstairs, tucked him in his toddler-bed, and sang him a lullaby she had made up herself. After he fell fast asleep Naomi and I worked together to make some gf/cf bread. She read the directions and answered my smuggled-in math problems about fractions and multiplication and division of ingredients, and we all felt proud of what we had accomplished.

Yes, they still make bad decisions. Sometimes they are downright selfish, and we did have one ear-splitting fight that ended with a torn game piece this afternoon. But the point is that that isn't all of life anymore. More and more I see patience, I hear kind words, I see selfless sacrifice for others. Entire games of Chutes and Ladders go by peacefully and end with the loser congratulating the winner now. Occasionally they pick up their toys without being asked. After a scream of horror I will often hear the words, "I'm sorry for...Will you forgive me?" without me intervening at all. And in these moments I think to myself, "Wow! I only had to repeat that phrase to them 6, 187 times in order for them to pick it up! It works! They can learn to be civilized!"

I often joke that God gave me three girls first because he knew Toby would need four mothers. Now, after seven years of intensive planting, watering, weeding, and fertilizing these three little sprouts have really begun to blossom, and I am intensely thankful to the One who makes all things grow. As we all sat on my bed this morning and looked at an in-utero photograph of a 24 week-old baby, and imagined how our new baby looks right now, and looked forward to his arrival, I felt much better prepared for this baby than for any of my others. I am older, wiser, more experienced, but more than all that, I am equipped with 3 1/2 live-in helpers that I didn't have before. They can't wait to be of service, and I can't wait to reap the harvest I have so long awaited.

Song and Play the Eby Way

2011-08-13T17:07:00.000-04:00

Here's a clip of Naomi, Hannah, and Emma pretending their Little People are their favorite characters from Narnia. The castle is the White Witch's Castle.

And here's a clip of Naomi singing a "clean-up" song as she puts away the Little People barnyard characters. Hannah and Emma sing back-up.

Skip, Skip, Skip to the Zoo

2011-08-12T20:49:00.001-04:00

Several weeks ago I gathered my girls and told them that one of my aunts, whom they don't remember meeting three years ago, had just had major surgery for cancer. I explained to them that one of the best gifts children have is the ability to cheer others up and encourage them. The girls worked hard that afternoon on "Get Well Soon" cards to send to my aunt. A week later my aunt sent back a note thanking the girls for the cards and saying that they now hung on her refrigerator. This made the girls feel very proud, and was all the thanks they needed, but my aunt also included a sum of money to be used to treat them.

We talked over our options for using this gift: new craft supplies, new books to read, expensive food treats, or going somewhere we don't normally have the money to go. It was quickly decided that all the kids would like to use the money for admission to the zoo. All we needed was a cool day on one of Matt's days off of work. Today met those conditions beautifully.

Everyone rushed through our morning routine, eager to greet this exciting day. They bounced with excitement in their car seats, and ran and shouted up to the admissions gate. The first exhibit we came to housed an enormous tiger, pacing round and round his confines. He would walk up to the window where we stood, stare us in the eyes, just inches from our faces, and then walk 'round again. On his last trip around before we moved on he stopped in front of Toby and yawned, stretching his gigantic mouth open enough to swallow Toby in two bites. Matt and I were as excited as the kids at this grand opening to our adventure, and I forgot to get my camera out.

Next door was a white tiger, lazily sleeping in the sun. The only show we got from this one was watching him roll to his back and snooze belly-up in the grass.

Soon we met the camels, visited a koi pond, and spotted two red pandas napping in a pine tree. They playful river otters amused us for nearly half-an-hour, and the bobcat growling as it ate its mice was an impressive sight. "There's Aslan!" Naomi announced as we passed the male lions, lying on the rocks.

A cage full of skittering little monkeys apparently inspired Toby, as he scaled the chain-link fence around their exhibit. When the girls saw me laugh and grab the camera, they, of course, had to climb too. We admired wallabies, silently watched a giant alligator sniff a dead rabbit, and laughed at the tiny tortoise who was turned on its back and left to wiggle by his ticked-off tank-mate. And when our eyes and our hearts were full of animals we headed to the enormous playground just outside the gates.

They climbed. They slid. They swung, and jumped, and laughed. They found a merry-go-round, something I haven't seen at a park in years, and went around and around again. And when the day was over Naomi summed up with, "Well...that sure was worth it!" It sure was. Besides, Matt and I had no trouble getting the kids to bed tonight. A perfect ending for a perfect day.

An Eby Week

2011-08-11T22:20:00.001-04:00

It's been such a calm few weeks--no major crises, no hilarious milestones--that people have begun asking me why I'm not posting more often. I guess it's taken me a week to pile up enough Eby family happenings that I feel like it's worthy of a post. Here's this week's run-down:

Toby succeeded in placing a bowel movement in the potty once this week. Great rounds of cheering and applause ensued while we all gathered around to congratulate him. Grinning with pride, he announced to his fans, "And it looks like a banana!" Well, yes, it did.

Hannah ran into the kitchen with excitement one afternoon to inform me, "Mommy, when I stab an empty cereal box with a sharp pencil it works just like a Narnian sword, and it actually pokes a hole in the box! It really does! A real hole in the box, just like a Narnian sword!"

To which I responded, "That's exciting, Hannah, but please be careful how you wield your sword or it will poke a real hole in you."

She sighed back at me, "Oh, Mommy," as she left the kitchen. Not three minutes later she ran back into the kitchen screaming, "Oh, it's blood! It really is! It's real blood! I saw it! It's red! Oh!" I coaxed her to uncurl her right hand from its grip on her left ring finger, and saw a blue dot of graphite near her nail with a tiny drop of blood on it." I, of course, cracked up laughing. "Don't, Mommy!" Hannah scolded, "Don't laugh like that! It really hurts."

I led her to the bathroom for repairs as I remarked, "Yep, real swords draw real blood, I think I warned you about that."

"Well," she scowled, "That's the thing about practice, you know."

One night I announced that I was making pancakes for dinner (gf/cf, of course). This announcement was followed by cheers of approval from my three girls. While they were whooping and dancing for joy, Toby caught the spirit of appreciation and thanked me with, "I like this dinner, Mommy. I'm so proud of you for this dinner, Mommy!"

Yesterday was a big day for me. Matt's car still being too sick to drive, I had to wake four sleepy children before 7:00am, dress them, groom them, and load their sleepy heads in the van with baggies of cereal for breakfast. We dropped Matt at work at 8:00, hit Wal-Mart from 8:15-9:15, then headed to Emma's allergy consultation at 10:00.

I had everyone use the potty before we checked in. The waiting room was tiny and packed. Toby bounced, growled, climbed, and wiggled for 40 minutes while I grew more and more frazzled from trying to keep him off of strangers' laps. When we were finally called back Naomi quietly sat and read a Highlights magazine, Hannah listened intently to the how-to's of de-molding a wet basement, but Toby and Emma had had enough. "I need to go potty!" Toby announced. There was no restroom available for our use less than half a block away, so I asked him to wait. "I nee go pah-ee ooh! (I need go potty too)" Emma echoed. The allergist tried to hurry her explanation, but Toby had his pants down within a minute. I quickly pulled them back up only to turn and see that Emma had her pants down now as well. Thankfully, the allergist laughed, admitting she had four young children at home. "I'm glad it's not just my family," she added. I am glad too. Toby and Emma both made it to the restroom.

Back home I was low on groceries and had to whip up homemade chicken nuggets and french fries from frozen chicken breasts and three russet potatoes. It worked wonderfully well. Next up was installing new mini-blinds to replace the ones Naomi had destroyed while over-zealously opening them for me. Then we headed outside for awhile to plant some mums I had picked out at Wal-Mart, where I had to multi-task planting, chatting with the neighbors, and keeping Toby out of the highway. After cleaning everyone up and downing a quick half-cup of coffee we were back in the van heading to pick Matt up from work. Back at home I created homemade sweet-and-sour chicken stir-fry, cleaned the kitchen, and packed Matt's lunch for the next day. While Matt put the kids to bed I rammed the lawn-mower through the gigantic weed-patch we call our yard, then topped the day off by heading to the grocery store. I pulled back in our drive at 11pm and dropped in bed at midnight.

What did I do today? Today was a day of rest. Of course that includes catching up on the laundry and dishes that fell by the wayside yesterday, making the usual two meals from scratch, and cleaning up Toby's perpetual puddle by the toilet, but I feel rested tonight. Rested enough, at least, to catch you up on another week at the Eby house.

Kids of Gluten-Free Catan

2011-08-04T20:26:00.000-04:00

With Matt's car temporarily out of comission, and Matt driving the van to work everyday, I have been unusually homebound and bored. After an evening playing Settlers of Catan with some family, it occured to me that it might be both fun and educational for my girls and I to play this game together. Unfortunately the game costs roughly as much as a new car, so we decided to make one instead.

Yup, I had a lot of time on my hands and some kids who love to help with craft projects. So we spent a day and a half cutting hexagons from old cereal boxes and contruction paper, cutting out cards and buildings and cities and roads, coloring with markers, and "laminating" it all with packaging tape. I estimate the cost was about $1.50 in paper and tape, plus roughly 11 hours labor. Naomi and I agreed that it was well worth the expense. And, since we made it ourselves we were able to make a gluten-free island, with rice as the grain instead of wheat. The game turned out quite well, and the girls and I played our first game this afternoon while Toby napped. I won, but they're getting the hang of it and can't wait to play again.

We rounded out the evening with some fresh-from-the-fields sweet corn, and couldn't wait to tell Daddy about our day! Most importantly the girls got a lesson in creativity and spent a whole day working with Mom. It doesn't get much sweeter than that.

The Comeback King

2011-07-28T11:06:00.000-04:00

He's quick. He's witty. He can crack my hard shell of frustration with one well-placed reply. Toby is the Eby household's new Comeback King.

He has heard me frequently advise the girls that their loud, repetitive noises or their overly boisterous songs are "annoying." Then, one day in the car I turned the radio on to my favorite music and I heard him yell from behind me, "No, Mommy! That's annoying!" Just yesterday I greeted the girls with a good-morning song and Toby interrupted me again, "Stop it, Mommy! That's annoying!"

He hates when I tell him to stay out of my way, so when I insisted that he turn the wooden spoon back over to Mommy while we were making pancakes together he protested, "No! No, Mommy! Bad, Mommy!" I sighed, "Toby, just let me stir my pancakes." To which he snapped, "Just let me stir my pancakes, Mommy!" Then, seeing that I wasn't giving in, he sat down in his chair, folded his arms over his chest, stuck out his bottom lip, and pouted, "Bad Mommy. Makes my sad!"

Toby's quick to tell us when the conversation is over his head. Hannah looked at the calendar yesterday and remarked that July was almost over. He scowled disapprovingly at her, "July? Don't know what that means!" We giggled at him, but no one offered an explanation, so he sat and mulled it over. An hour or so later, when we were discussing the day's plans he confidently inserted, "Tomorrow we gonna go to the July!"

Last night, while Matt was putting the girls in bed, Toby came downstairs to use the potty then found me working to organize some stored food in the basement. It was a dirty job and his insistent attempts to stack the canned goods five-high then knock them over, were wearing down my patience. When he stole my broom and attempted to sweep the walls I grabbed at the broom angrily and ordered him, "Upstairs! Enough, Toby! You need to go back upstairs to bed right now!" He looked at me as if he was annoyed, but pitied me and remarked on his way back up the stairs, "You have too many kids."

Five minutes later, as I came up the stairs, I saw Toby was waiting for me in the kitchen. His cheery nature had revived and he happily greeted me with, "Hey, I recognize you!"

I was still chuckling when I tucked him in bed late last night. Toby wasn't tired. He and Naomi and Hannah stayed up gabbing away with each other about complete nonsense for far too long. Finally, I put my head in the door and warned them that it was late and they needed to quiet down. Toby protested, "But we're talking!"

"You've been talking all day, Toby," I answered, "and you'll talk all day tomorrow, I'm sure. Let's give it a short rest."

He is back at it today, greeting my vacuum cleaner with, "Hi, Mrs. Vacuum, do you need a haircut?" and chasing Hannah and Emma around the house yelling, "I'm a slave trader!" To which Hannah is screaming, "Run, Lucy! Run! Isn't it dreadful? We must run for Narnia!" A short rest it was.

Sunday School Streaker

2011-07-25T18:20:00.000-04:00

"What in the world?" Matt laughed on Saturday evening as Toby ran naked through the kitchen.

"I have to go potty!" Toby yelled back urgently.

I raised my eyebrows to Matt and shrugged my shoulders, "He has to go potty. It's his third day of potty training. Who cares if he takes his pants off before he gets to the bathroom? We'll work on the proper order of things later."

Toby was doing amazingly well to have the physical ability, mental know-how, and desire to perform so well so soon after having been introduced to the potty. I wasn't about to make things more complicated for him. Silly Matt, what does it matter, anyway?

Sunday morning our small church family was gathered together for an all-ages Sunday School class, as we often do during the summer. The kids didn't mind joining the adults since we were watching a movie about the life of Gladys Alyward, a missionary to China.

Partway through, the leader paused the movie and asked if I would read a passage from a biography that described how Gladys was asked to intervene in a prison riot. I began to read the tense narrative, but suddenly choked on my words when my peripheral vision caught sight of my son. He had stripped off his navy blue shorts and his pink princess pull-up and was on his way to the bathroom on the other side of the room. "Um...Matt!" I tried to whisper discreetly.

Matt quickly scooped up the half-naked Toby and walked briskly to the bathroom, explaining, "Sorry, we've been working on potty training at our house." A quiet chuckle swept through the room, and I continued reading, but the laughter welled up inside me, and snuck out a couple of times.

OK, so maybe Matt had a point. Day five of potty training will include instruction in the proper order of pottying. Hopefully he'll have it down before we have to venture into public again.

County Fair

2011-07-25T15:37:00.001-04:00

It was hot and humid. A large part of me wanted to continue hiding in our air conditioned house, but Toby's pleas to "go bye-bye!" finally prodded me to action. He didn't care where we went at all; he just needed action, and though the girls were less vocal, I knew they needed a dose of fresh air and excitement too. So last evening, as the temperature was holding steady in the low 80s and the humidity was climbing, I gathered up the supplies, the stroller, a reluctant husband, and four children giddy with excitement, and off we drove to the county fair.

"Are you guys excited to see some animals?" I asked, turning around in my seat so I could see their glowing faces. "Toby, do you want to see some cows, and horses, and pigs?"

"Yeah!" Toby squealed, "and dinosaurs!" This sent all three girls into giggles, which greatly pleased Toby.

The parking attendants corralled us to the far south end of the grassy field. We were a little annoyed as we loaded up the double stroller and headed to a gate we hadn't used before, but we were rewarded when we walked in and found a young girls' 4H riding competition underway. Some of the girls weren't much older than Naomi, and she was spellbound watching them guide their horses around the arena. We stood at the fence, with the horses trotting by a few feet away. We talked about how the girls used the reins to control their horse, and Hannah had to remark that the white horse wearing the hot-pink socks and hot-pink bridle was "so pretty."

Next up was the dairy barn, where a teenage girl let us pet her small, brown cow with huge, wondering eyes. Toby was very brave until the cow lifted her gentle head to stare him in the face. "It's not gonna bite Toby," he whispered, reassuring himself. The swine barn was full of enormous, squealing pigs with wet, snarffling snouts. The goat barn held curious goats that stood on the rails of their pens and leaned their heads over to nibble our clothing. "Look, Naomi," I joked, motioning to the goats lined up at the fences to see us, "the goats think the fair is for people watching."

Matt's brother, Philip, joined up with us, and Emma glowed as she held Uncle Phil's hand and walked bravely through the barns. "Are you Uncle Phil's girl, Emma?" I asked. She smiled and answered shyly, "Yeah."

We wondered at the funny looks of the llamas in the yellow tent. Hannah laughed, "They look like they belong in Narnia."

Matt agreed, "If they had a human head they'd look just like a centaur."

We admired the long, floppy ears and the soft fur in the bunny barn. We laughed at the strange feathers and jerky walk of the roosters as they crowed. We saw turkeys, and ducks, and geese. We petted lambs and peered into an incubator of baby chicks. There was a litter of day-old piglets all snuffling and snarfing to find their place at their mother's belly. There was four-week old colt of a miniature horse. And then there were the rows and rows of antique tractors. Toby got the chance to drive one before we saw the sign that read, "Please stay off the tractors!"

After a round of hand-sanitizer, water bottles, and gluten-free snacks from the diaper bag, we headed to the carnival. The rides were far too expensive to ride, but the kids enjoyed just watching the excitement. The music blared, the lights flashed in the dusky sky, and the people around us screamed with thrill. We stood quietly, just mesmerized with the sights and sounds. We wandered among the rows of carnival games, listening to the men call our their winners, and admiring the larger-than-life prizes they offered. "Look at that banana!" Naomi said. I brought her back to reality by asking her, "But what would you do with a banana that's bigger than you?"

The sky was dark as we made our way back towards the gate, three hours later, but there was one more stop I wanted to make. The draft horse barn was filled with the most heart-stopping giants that the fair offered. Enormous Belgian horses, weighing over 2000 lbs, towered over us and leaned their awe-inspiring heads down to inspect us as we passed by. "Look at their hooves!" I urged Hannah, pointing to the hard, glossy feet the size of Toby's chest.

Hannah agreed, "Those could sure squish a Toby!"

Naomi's pace slowed and she began to complain as we trudged back to the entrance, but the sight of the horse competition ring all lit up under the dark sky quickened her pace to a gallop. We stood by the fence one more time, admiring the girls and their horses, and then it was time to leave.

"Did you like the fair?" I asked Hannah as we passed the quiet trailers and made our way through the rows of cars.

"I still like it!" Hannah insisted, with her usual desire not to let the fun die, "I like the lightning bugs and the street lights and our shadows on the ground."

The girls were drifting to sleep as we drove the quiet county roads on our way home, but Toby's eyes still glowed with excitement. "We saw all those horses!" he reminded me when I turned to smile at him.

"Yes," I agreed, "and cows, and goats, and bunnies, and sheep...Which animal do you like best?"

Toby didn't hesitate one second. "Tigers!" he yelled.

Maybe a trip to the zoo needs to find its way to our August calendar, but the Fair must have been a close second.

Potty Training Mommy

2011-07-22T16:03:00.001-04:00

I've potty trained three girls, and none of those were pretty experiences. So when Toby began wanting to use the potty I tried to deter him. In my experience, starting early only means more months of cleaning up messes. But Toby has been so persistent in de-robing himself and putting himself on the toilet that, when a three-week break in appointments appeared in my schedule starting yesterday, I decided to give it a go.

I lined up paper towels and various disinfectants; I gave a pep-talk to the girls about being good helpers and a pep-talk to Toby about being a big boy now; and then I let him run in the buff on our tiled floor. Not long into the adventure he started to pee and, to my amazement, stopped himself mid-stream and looked at me with wide eyes. "You're peeing," I instructed Toby, "You need to do that in the potty. Here, come sit down. Put it in the potty now." And I nearly fainted when he actually followed instructions. That has been nearly the end of teaching Toby how to pee in the potty. He's a peeing pro already, with 95% average accuracy by his second day of training. Oh, if only it were so easy with that second bodily function.

The main problem with Toby's grand success yesterday was that I hadn't been prepared for it. With him performing so well I couldn't put him back in diapers, but I hadn't yet bought any little boys underwear for him. The poor child ended up in pink panties, and with his love of girls shoes, he looked like a full-blown cross-dresser by the time Matt arrived home from work. Fortunately, a quick run to Wal-Mart remedied that with some very manly Thomas the Train underwear. Toby was pleased to wear the same kind of underwear as his four-year-old cousin, and I went to sleep wondering why I hadn't trained this boy sooner. Today I was reminded.

It had been going too well. Toby had even made some decent attempts at putting his poop in the potty yesterday. Some mess is par for the course, so I was encouraged with his efforts. But today an unforeseen evil, far beyond anyone's control, an insidious evil, determined to undo my efforts, has crept into the intestines and underpants of nearly every child in my house: diarrhea.

There had been signs of this menace before I started potty training: some tummy aches, some loose stools; but today this growling bull-dog has suddenly sprouted seven heads, latched them all onto my jugular vein, and begun sucking every ounce of potty training ambition out of my blood. I fear it may not let up until all four of my children are again wearing diapers.

Toby started today with two self-led potty stops and sparkling clean Thomas underpants to prove it. So when he walked wide-eyed and stiff-legged into my office with a brown trail behind him I tried to take it in stride. "Did you have an accident?" I asked, in my most understanding voice. I coached him on the warning signs and the appropriate placement of such materials while I scrubbed him down and wiped up his trail. An hour later, in an attempt to obey my instructions he fled to his potty, brown trail following; swiped down his underpants, smearing all the way; and smashed his already coated behind all over the potty seat. I stood, breathing deeply, trying to remind myself that this was a good sign.

"Oh, did you go poopy again?" I asked sweetly, "Well, thank you for trying to get to the potty..."

"I oop in the potty!" Toby announced proudly, standing up quickly and pointing the the milliliter of brown liquid that had dripped in the proper place.

"Toby, sit down!" I barked, then, regaining composure, "you sure tried, didn't you? But you did get your underwear all messy (and your entire lower half, and the floor, and the potty...)"

"Can I have one Skittle?" Toby bargained, knowing he didn't deserve the usual three. And this was only the beginning. Shortly after I had bathed Toby for the second time and re-scrubbed underwear, potty, and floor, Toby began to pester his sisters. They responded by closing the door to their room in an attempt to keep him out. This, because of a history of finger-pinching along with its generally rude nature, is against house rules, as they well know. Toby, attempting to break into the room, accidentally pushed the sliding lock on the antique door-knob to the side, locking the girls in their room. Once they realized their plight they began frantically screaming, and once I realized that they had received just punishment (or what we often term "a life spanking") for their actions, I dawdled before freeing them from prison.

After listening to their screams for a minute I slowly made my way up the stairs, and finally unlocked their door. I raised my eyebrows to them with a confident "I told you so" look and began my speech, "Did Toby lock you in your room? Maybe that's what you deserve for closing the door on him..."

Hannah interrupted me with a pained look on her tear-stained face, "But Mommy," she cried, "I had to go potty...and I pooped in my underwear." Suddenly, I no longer felt victorious. Round three of diarrhea clean-up ensued.

I was more than anxious to put Toby down for his nap this afternoon, securely wearing a disposable pull-up. (Never mind that it was covered in Disney Princesses.) I calmed my nerves with half a cup of coffee and went downstairs to load my washing machine with infectious material. Before the washing machine was started Hannah called down to me, "Mommy! Emma just pooped in her underwear!" And I began to see the lighter side: hey, at least I hadn't started the load of wash yet.

Soon after Emma was cleaned up, Naomi and Hannah were engaged in a battle over who needed the potty worse, and I actually heard myself yelling, "Naomi if you don't hurry and get off the potty, and if she poops in her underwear, you're washing it! I'm done!"

My washing machine is doing overtime this afternoon, I am nearly out of paper towels, and my nose has started bleeding from the smell of bleach in this house. (I'm sure this isn't the best for the baby, but then again, catching a diarrhea virus wouldn't be all that beneficial for it either.) I am determined not to lose the ground I've gained in this potty-training war. I can handle this. All it takes is a plan.

"OK, anyone who is about to pee or poop in their pants line up here, in line A! Good, now anyone who has recently peed their pants here, in line B! And anyone trailing brown behind them, you're in line C! OK, line A, on the potty now! Line B into the tub, leave your pants at the hamper! Line C, don't move, don't touch anything! I'll be right with you. And line A, watch where you step!"

Nothing too it. I can handle this. How long can this virus last anyway? I just hope I don't pass out before it does.

Sharing Stories, Sharing Hope

2011-07-20T14:42:00.000-04:00

I want to thank all those who have stopped by my blog in the last two weeks to read "A Letter to a Mother Considering Terminating a Pregnancy for ARPKD". Thank you to those who have posted this letter to your blogs as well, and to all who have taken the time to leave comments of hope and encouragement to me. I didn't expect this letter to reach thousands on the Internet, it was intended for one mother, but God works in ways very mysterious to us.

Sadly, I heard yesterday that the mother I had written this letter to did decide to terminate her pregnancy. Clearly, we hold different worldviews, and my letter could not change that. My hope is that others who have read my letter have been strengthened in their faith, and that God may use my words to soften the heart of another mother out there.

To my amazement, one non-profit organization called "Hunter's Hope" also contacted me to let me know that my letter touched their hearts. This organization was founded by NFL hall-of-fame quarterback Jim Kelly and his wife Jill after their son, Hunter, was diagnosed with a degenerative terminal illness. They have encouraged my heart by sending me an autographed copy of their book "Without a Word: How a Boy's Unspoken Love Changed Everything." So, in turn, I want to commend their story and their book to others who would like to read the tear-jerking, heart-warming account of their journey in faith through the life and death of their son.

Here is a clip from Jim and Jill Kelly's recent appearance on Fox News:

There is joy in sharing our stories, encouraging each other on our journeys, and bringing hope to those who follow behind us.

As a Father Has Compassion...

2011-07-19T13:49:00.001-04:00

The perinatologist watched intently as the ultrasound technician measured each detail of our baby's brain and spine. I wished they'd move straight to the kidneys, but it seems these come near last in the long order of the anatomical survey. He questioned Matt and I about our previous pregnancies, wanting to know exactly what we were watching for today.

"Well, our son showed only one kidney at twenty weeks," I explained, turning my head away from the screen to talk to him, "and two of our daughters showed echogenic (bright) kidneys at twenty weeks."

I would have delved into more detail, but he interrupted me, and in one casual comment erased weeks of worry. "Well, there are your baby's kidneys right there," he shrugged, "and they look fine to me."

Reluctant to let my guard down, I questioned him further, "So you can see both kidneys? And they're normal sized? And they don't look echogenic? And the amniotic fluid level is normal?" He smiled and assured me that all looked perfectly healthy, but that they'd see me again in eight weeks to be sure. "I think you ought to leave here feeling pretty good today," he concluded. I looked back to the sweet, peaceful face of our baby on that screen and breathed a huge sigh of relief.

God has granted us a fifth child, our second son, who seems to be in perfect health. We could never take that for granted. We could not feel more blessed. Thank you to those who have stood by our side and upheld our family before him in prayer. And now, it's time to praise him.

Psalm 103

¹ Praise the LORD, my soul;
   all my inmost being, praise his holy name.
² Praise the LORD, my soul,
   and forget not all his benefits—
³ who forgives all your sins
   and heals all your diseases,
⁴ who redeems your life from the pit
   and crowns you with love and compassion,
⁵ who satisfies your desires with good things
   so that your youth is renewed like the eagle’s...
⁸ ...The LORD is compassionate and gracious,
   slow to anger, abounding in love.
⁹ He will not always accuse,
   nor will he harbor his anger forever;
¹⁰ he does not treat us as our sins deserve
   or repay us according to our iniquities.
¹¹ For as high as the heavens are above the earth,
   so great is his love for those who fear him;
¹² as far as the east is from the west,
   so far has he removed our transgressions from us.
¹³ As a father has compassion on his children,
   so the LORD has compassion on those who fear him;
¹⁴ for he knows how we are formed,
   he remembers that we are dust.
¹⁵ The life of mortals is like grass,
   they flourish like a flower of the field;
¹⁶ the wind blows over it and it is gone,
   and its place remembers it no more.
¹⁷ But from everlasting to everlasting
   the LORD’s love is with those who fear him,
   and his righteousness with their children’s children—
¹⁸ with those who keep his covenant
   and remember to obey his precepts.

What Tomorrow Holds

2011-07-18T10:33:00.000-04:00

Little Baby,

Tomorrow the world will decide
Whether you are worthy of life
They will use their best instruments
To painstakingly measure
Each tiny feature of your forming body

They will compare what they find
With the millions of others they've studied
They will make their best educated predictions
As to how long and in what way
You would live on this earth

And they will base the value they assign to you
On the numbers they have gathered
They will advise me to keep you alive
If they predict that you will live a long life,
Feel little pain, and cause me little discomfort

They will advise me to end your life as soon as possible
If they predict that you would not live to a full life expectancy,
That you may have to endure suffering,
Or that it may difficult for me to walk beside you
As you struggle through your life

Little Baby,
Tomorrow I will love you
As I have loved you today
Tomorrow I will protect you
As I have protected you
Since the day you were sent to me

Perhaps I will breathe a sigh of relief
When the medical experts predict
A long healthy life for you
And an easy, predictable road for me

But if they deem you unworthy of life
If they advise me that you would prefer not to live
And that the world would benefit
From not having to meet the challenges
Your unique life would present it
I will fight for you

I will fight for you
Because life's value is more than an equation
Than can be computed from the days of life
One is predicted to live
And the degree of hardship they are predicted to face

I will fight for you
Because my love for you is not founded
On what you can offer to me
Because love does not recoil at the prospect of pain
Or abandon when another suffers

I will fight for you
Because ending your life early
Would rob you of the chance
To see the sun's rays peeking
Between the ominous clouds
To learn the blessing of enduring
When everyone tells you to give up
To know the peace of resting in warm arms
That would not leave you in your darkest hour

I will fight for you
Because the world may not know that it needs you
But I know

They have forgotten that life without trials
Brings laziness, discontentment, and self-centered greed
They have forgotten that in giving ourselves
For the helpless, the hopeless, the defenseless and innocent
We learn patience, endurance, thankfulness, and selfless love
In laying down our own hopes, and sacrificing ourselves
We find greater joy than our own dreams
Could ever have brought us
I learned this when I fought for your sisters' lives
And I pray that I can teach them as I fight for yours

Little Baby,
Tomorrow we only learn their best guess
As to what sort of life we will share
But I promise our ways will not part
Until the hands that placed you in my safe arms
Reach down to lift you back to His

Low White Cell Counts: Follow-Up

2011-07-14T09:13:00.000-04:00

I just spoke with a nurse who finally released Naomi's labs to me. The white cell count rose slightly to 4.2, well below the minimum 5.2, but increased enough that it is not dangerous. We will just continue watching, probably with another count in a month. We do not know for sure what is causing the low counts, but it isn't low enough to warrant lots of investigation. I guess we just pray they continue to climb without intervention. Thanks for your prayers.

Low White Cell Counts: Naomi's Next Challenge

2011-07-13T15:01:00.000-04:00

I'm spending another afternoon waiting for test results today. Naomi's white blood cell counts have been progressively dropping over the last five months. White blood cells counts are supposed to be between 5.2 and 14.8 K/mm3. In February Naomi's levels were 4.7, in May 3.6, and in June 3.0. In June Naomi had a terrible time getting over a stomach virus that went through our family. She had awful diarrhea for a week and lost four pounds, then was excessively tired and listless with low appetite for another two weeks. This is almost certainly due to her body's lowered ability to fight infection without the proper number of white cells.

We had another Complete Blood Count drawn yesterday, and I am anxiously awaiting word now. It's difficult not to speculate about what all this means. I have a detective's mind that is endlessly trying to draw connections to help understand my daughters better. Sometimes this gets me in trouble, but sometimes I am right and my thoughts prove valuable to helping the doctors treat my children. As writing seems to be my best therapy, I'm writing out my thoughts today.

I was told that if the counts dropped below 3.0 at all it would be considered dangerously low and we'd be referred to a hematologist for follow-up. The most likely explanation for the low count is that Naomi's liver fibrosis has progressed to where the blood in the portal vein cannot easily flow though the liver, causing portal hypertension (high blood pressure in the portal vein). This is an extremely common result of congenital hepatic fibrosis. The pressure in the portal vein causes the spleen to enlarge and small blood vessels in the esophagus may burst, causing life-threatening bleeding. The spleen under pressure may begin to sequester or trap platelets and/or white blood cells. Typically an enlarged spleen with low platelet counts are the first signs, but a slightly enlarged spleen with only low white counts can be the first sign as well.

Obviously, there are other explanations for low white cell counts including immune-system disorders where white cells are destroyed in large amounts (since Naomi has one auto-immune disease already this is not entirely out of the question), and bone-marrow disorders where white cells are not produced in sufficient quantities. However, I think the theory of the spleen trapping the white cells because of portal hypertension is most likely.

If this proves to be the case we are probably looking at four options:

1) Shots of a medicine that forces the bone marrow to produce more white cells, though if the spleen is just going to trap these again this seems an unlikely solution.

2) Surgery to place a shunt from the portal vein to another major vein. This allows some of the blood in the portal vein to be rerouted off of the backed-up portal "highway" to a less-crowded side road that leads to the body's main "interstate highway." This is an effective way to relieve pressure on the spleen and the vessels in the esophagus. It is proven effective at restoring blood cell counts and preventing esophageal bleeds. The problem is that the blood in the portal vein was bound for the liver for a reason: it is full of toxins that need to be filtered out by the liver before being released to the rest of the body. When a shunt sends portal vein blood to the main vascular system again these toxins can reach the brain and cause slowed brain waves (hepatic encephalopathy) in 1/3 of shunt patients. Naomi has enough issues with clear thinking already; I am not anxious to add encephalopathy to her troubles.

3) Removal of the spleen. This would restore normal blood counts, but does not lower pressure in the portal vein and so does not prevent the life-threatening esophageal bleeds. When the spleen is otherwise healthy and normal sized this is often not the option of choice.

4) Liver transplantation. Now that organ transplantation is becoming more common and successful, and now that it is possible to transplant one lobe of liver from a living donor this is fast becoming the treatment of choice. The fibrosis does not recur in the donor liver, portal vein pressure is restored to normal, the spleen can remain intact, blood counts return to normal, and there is no longer a risk of esophageal bleeds or the liver infections that often plague kids with hepatic fibrosis. Of course, there are the draw-backs of major surgery for both donor and recipient, life-long immune suppression therapy for the recipient, and the possibility that the liver may be rejected or may need to be retransplanted later in life.

As I wait for the phone to ring, none of these options sound appealing to me. I would like to hear that Naomi's white cell counts have inexplicably returned to normal levels and that no further follow-up is needed, but that probably isn't what I'm going to hear. I will post again when I have more information.

Toby Wins the Word Battle

2011-07-10T19:28:00.000-04:00

Yesterday Toby was shadowing my every move as I cooked dinner, as he always does. I turned my back for a minute, and he cautiously picked up a knife from the table. Emma spied this from across the room and yelled, "No! Goby! No ay!" (No Toby, no knife). I turned to Toby and scowled at him with a "put that down right now" look.

Toby was disgusted with Emma and fired angrily back at her, "Go away, Emma. Why don't you go play with toys!"

I stood a moment processing what he had just said, but it didn't take me long to figure out where he'd learned that language. I think I've used those same words to him when he was driving me nuts before. His amazing ability to remember phrases and idioms and use them correctly with appropriate intonation at the age of 2 years, 4 months leaves me astounded every time. It might be time for me to start watching what I say to him.

Tonight Toby dragged a bag of toys into my office and announced, "I've got myself and my bag!" Yourself is all you're ever going to need, Little Buddy.

A Letter to a Mother Considering Terminating a Pregnancy for ARPKD

2011-07-07T13:02:00.002-04:00

I joined the yahoo group for ARPKD/CHF (the genetic kidney/liver condition that Naomi and Emma live with) just a few days ago in order to post a question about Naomi's recent low white cell counts. Now I have found myself in a world with hundreds of others affected by this disease. Most are asking questions like mine, or sharing support and comfort, but this morning a mother posted that she had just received the news that her 13 week gestation unborn baby has ARPKD/CHF (definitive genetic testing had been done). She is considering terminating the pregnancy in order to avoid the otherwise inevitable suffering of her child. Many on the message board have also chosen that option, so I chose my words carefully, but I just could not remain silent. The following is my response. Please pray for Emma as she makes this most heart wrenching decision.

Emma,

I am so sorry that you received this news. Please know there are hundreds around you who have been in this same or a very similar position. We know the pain that facing this decision brings you. Many others before you have followed the advice of doctors, family, and friends to terminate such a pregnancy. I understand that the decision they make is almost always out of the highest love for their child and a desire to prevent suffering. I want to be very sensitive to that, but to also encourage you to look from a different point of view.

It seems to be a foregone conclusion in our culture that preventing suffering is the highest goal, but I think we lose sight of the fact that sometimes in our lives the greatest blessings come to us after we have gone through the greatest suffering. I was advised to terminate with two of my ARPKD daughters after their 20 week ultrasounds. The following weeks, months, and years have been difficult and even terrifying, but I am so glad that I did not follow my doctors’ advice. Yes, my daughters have suffered to some degree (though I know not as much as many other ARPKD kids do), but their pain and tears have grown them into strong little girls who do not take life or health for granted, and who know how to be thankful for the little things in life. They are more mature, more wise, more grateful, more loving, than so many other children their age who have always had “perfect” lives.

Children with special needs have a way of blessing and inspiring those around them too, in a way that healthy children never could. I know greater suffering probably lies ahead for our girls as we face esophageal bleeds and organ transplantation, but we have talked these things through with our oldest, and if my seven year old daughter can face these things with courage, then perhaps she doesn’t need to be shielded from the suffering, but only equipped to walk through it. Someday my girls will take the faith and the strength that they learned from their sufferings and use it to inspire and bless all those around them. It would have been great loss for all who know them to have ended their lives early.

I know that this is one of the most sensitive and personal topics. I pray that I do not sound judgmental in any way. I only mean to offer hope.

With love,

Katherine Eby

Fireworks!

2011-07-06T16:37:00.001-04:00

Naomi and Hannah were anticipating the Fourth of July celebration ever since they remembered that July is the month that follows June. "We're going to go see fireworks!" Hannah informed Toby. "You'll like fireworks! They make a loud BOOM!" And after that cat slipped out of the bag Toby wouldn't stop asking if today was the day we were going to see fireworks.

When I laid him down for a nap on July 2nd he cried, "I not going nigh-night! I going to see fireworks! Makes loud noise!" I stretched the limits of his two-year-old brain by assuring him we would see fireworks together "the day after tomorrow." Thankfully, he fell asleep trying to figure that one out.

We tucked the kids in bed by 8:30pm on Sunday the 3rd and talked about seeing fireworks the next day. Then, with a phone call from my mother-in-law, I realized I had wrongly assumed that the show we'd been planning on seeing as a family was on the 4th. It was actually set for 10:15 that night, in less than two hours. Frantically, I gathered diapers, wipes, snacks, sippy cups, blankets, sweatshirts, bug spray, a double stroller, and a wagon. I scoped out the best place to park and walk online, then Matt and I loaded four very excited children into the van, still in their pajamas.

We arrived a little after 9:30pm, but ended up having to park 3/4 of a mile away, a bit farther than I'd planned. With Toby and Emma in the stroller, and our enormous pile of supplies in the wagon we began the speed-walk race to the show with Naomi and Hannah skipping ahead. "Oooohhhh!" Hannah squealed, each time someone in the neighborhood lit off one of their own fireworks. "This really is the Fourth of July! It really is, because those are fireworks. I know because they make that loud boom, and they look like real fire! Real fire, Emma, see? So I know it's the Fourth of July! It really is! And we're going to see more fireworks, even bigger ones, and....Ooooohhh! There's another one! Did you see that Naomi? Mommy, did you see that? That was a real firework! It looks just like real fire!"

I wasn't sure whether my legs or my ears were more tired by the time we found our place among the throngs and settled down on our blankets. Fortunately, the crowds of moving, chatting people decked out in glowing necklaces entranced my children, and even Hannah found herself speechless. Even better, every mosquito in the city seemed to have already drunk its fill by the time we arrived and I was spared the ordeal of bug spraying the kids. I distributed baggies of apple slices and we quietly munched as the sunset disappeared.

Naomi squinted and covered her eyes as the first few flares lit up the sky. "It's too bright," she complained, backing off our blanket a few feet, as if that extra yard would protect her eyes from the light. Toby quickly scrambled into the safety of my lap, then sat happily mesmerized with the show. Hannah and Emma's faces glowed as they smiled quietly at the colorful sky. One of the first loud "Booms" set the tiny baby in my tummy kicking and squirming. I had just read about how hearing and reflexes were intact by this point in my pregnancy, and I've no doubt that little boy was startled by the sound. I snuggled Toby in close over my tummy to muffle the noise for his little brother.

"Look at Toby," I whispered, nudging Matt beside me. Toby had suddenly reached both hands high into the sky above him and silently held them there. We chuckled a little, then Toby gasped, straining his little voice, "I can't reach them!"

It was a spectacular show, but, of course, over too soon. We packed up and quietly made our way through the crowds. It wasn't until we were walking again through the dark, less crowded neighborhood that Hannah found her voice. "Those sure were fireworks!" she sighed. "Maybe we'll still see some more. Maybe more people aren't done with them yet. Oooohhhh! There's one! See? I told you there would be more fireworks still. The Fourth of July isn't over yet, because it isn't really even the Fourth of July yet. It's only the third today. So the fireworks aren't done. I'm glad, because I like the Fourth of July. Right, Emma?" But Emma was already sound asleep in the stroller. "Well, right, Toby?"

"Makes loud noise!" Toby agreed.

"We'll probably see some more in Grandma Eby's neighborhood tomorrow," I reassured Hannah. "And we'll have a cookout, and you can go swimming."

"I just can't wait!" Hannah squealed. She was not disappointed, and now we have fuel for the imagination for a whole nother year.

Today, if you visited my house you would hear little girls asking each other, "Who wants to pretend seeing fireworks? How about Narnian fireworks?! I bet they have fireworks in Narnia!"

Into the Wardrobe, with No Hope of Return

2011-07-05T18:25:00.000-04:00

Matt has been reading through C.S. Lewis' Chronicles of Narnia with our girls at bedtime for several months now. The story has filled their minds and our lives for weeks on end. Each "Little People" doll in our house is now designated as a character from the story. Paper towel rolls have been transformed into swords. Two egg cartons, cereal boxes, and yarn have been intricately designed into an exact replica of the Dawn Treader. Finger-paint swirls are a Narnian landscape at sunset. Play time now holds epic battles against the White Witch or Miraz's army. And I have lost the privilege of calling my children the names I chose for them.

The girl I used to call Naomi now answers to "Susan." Hannah fires an angry response my way each time I forget that she is really "Edmund." Emma doesn't mind being called Emma, but the others are quick to remind me that her name is "Lucy." "Peter" is always present, I just can't see or hear him. Toby announces with a grin, "I Caspian! Prince Cas-Pi-An!" "Reapacheep" also haunts our house along with a female counterpart mouse named "Dally" that Hannah imagined to keep him company.

My children have all acquired something of a British accent as well, no doubt from hearing how the characters talk in the movies. If I question my children about spilled cereal I am likely to hear the response, "Eet wahs prohbably Reapacheep. He's ahlways geetting into trohble. Reap-a-CHEEP! Geet in thah ahnd clean up yah mess!" Or a slightly more realistic, "Go ahsk Prince Caspian."

It's hard for Susan, Edmund, and Lucy to understand that their cousins and church playmates don't understand or enjoy living in Narnia the way they do. No matter how they try to explain to their cousin, whom they've dubbed "Eustace," that the boat in the swimming pool is actually the Dawn Treader in a vast Narnian ocean, all he wants to do is sink it. This infuriates Susan, and she sometimes has to be removed to a Narnian time-out to be reminded that not everyone realizes they are in Narnia yet.

I have been assigned multiple roles in this drama, probably based on my children's disposition toward me at the time. While overseeing the evening toy clean-up I have heard all of the following from my children: "The professor wants us to clean up our toys, he's tired of stepping on them all the time," "Yes, you have to clean up, Edmund. Aslan says so, and you have to do what Aslan says," and my favorite, "The White Witch just told us to clean. Don't do it, Susan. Don't do what the Witch says!"

I probably ought to scold my children for this disrespect, but I get better results if I play the part and offer them some Turkish Delight if they clean, or threaten to turn them all into stone when they don't. Somehow, imagination suddenly transforms toy clean-up into a race to save their lives from the evil witch. We soon find ourselves laughing, in the clean castle at Cair Paravel and enjoying "Narnian Popsicles," which, according to Edmund, taste "much better" than ordinary Popsicles. Yes, of course, everything tastes better with a little imagination added.

Unexpected Worry, Unexpected Announcement

2011-06-27T22:16:00.000-04:00

I woke with less than normal patience for Toby's screams this morning. I was tired, achy, and grumpy. While serving the kids' breakfast I was suddenly stabbed with a pain in my lower abdomen. I froze and waited for it to pass, ten seconds, twenty seconds, and finally the pain subsided. I tried to ignore the incident and went on tending to the kids. A persistent lower backache followed, then intermittent abdominal cramping. Both are classic signs of pre-term labor after 20 weeks, or what would be termed "late miscarriage" at this point since I am 16 weeks along.

I have a history of an "irritable uterus" and plenty of preterm contractions with all my other babies, but it had never happened this early in pregnancy, or felt quite this way. After 45 minutes, I could no longer ignore it. Thankfully, it was Matt's day off today, so I left the kids in his hands, drank a big glass of water, and laid down in bed. The cramping only grew worse and closer together. I could feel my uterus tightening under my hand, and I decided it was time to call the OB. The nurse promptly instructed me to head to the ER, and my mother-in-law drove over quickly to watch the kids.

I tried not to worry, knowing that I've rushed in to the hospital with preterm contractions before, and they have always died down uneventfully within a few hours. But the nagging thought that I hadn't felt this previously active baby move for two days now kept pushing its way forward in my mind. The contractions did slowly grow less intense and farther apart as Matt and I drove to the hospital. By the time the doctor saw me I was beginning to feel silly for being there, and I rehearsed a speech to myself about how I need to stop worrying about preterm contractions.

I held my breath a little as the ultrasound tech put the wand to my belly. We saw the baby's head, and then an abdomen, and then a beating heart, and I breathed a huge sigh of relief. The tech went about measuring various body parts, but when I expressed concern that the baby wasn't moving, he jiggled my belly with the wand, and the baby startled and kicked. Feeling much relieved, I asked about the kidneys, but the tech replied that it was still too early to see them. The thought occurred to me then that the gender can sometimes be seen by 16 weeks, so I cautiously asked the tech if he could show us the gender. He obliged, and Matt and I had no trouble at all discerning that we indeed had a second son.

It was a wonderful moment, to go from such concern, to such joy in a matter of minutes. After another hour of waiting the doctor informed me that the baby was fine, but that a swab of my cervix had indicated there was a bacterial infection, and that that was likely what had caused my pain and cramping. These infections can cause late miscarriage, preterm labor, or preterm rupture of the membranes if left untreated, so I left with a prescription for antibiotics and the reassurance that I had made the right decision to seek treatment this morning.

The girls were thrilled with the announcement that another boy was joining our family. I smiled as I watched Toby straining to pick Hannah up tonight. "Oh! So high! So heavy!" he grunted as he attempted to carry her around the living room. It is good to know that boy has a brother on the way. I am still tired and a little crampy, but I don't know that I could feel more blessed.

Toby vs. Daddy Wrestling Match

2011-06-25T21:58:00.000-04:00

Toby rode on Hannah's back today. He chased Emma mercilessly around the house, hoping to find a good tussle. But the girls wore out too easily and he actually cried when they grew annoyed and gave up the fight. I consoled Toby with the assurance that he could wrestle Daddy tonight when Daddy came home from work. He didn't forget my promise.

Matt and Toby had a good tussle before I picked up the camera. Then Matt laid down for a short nap on the couch, but Toby wasn't through with him yet. In case you've ever wondered if I exaggerate Toby's aggressive nature a little, or in case you're one of my family members who have only seen Toby when he's sick: here's the last five minutes of a Toby-Daddy wrestling match. You decide the winner.

Fast-Track to Bedtime

2011-06-24T21:56:00.001-04:00

While pregnancy nausea has vanished, pregnancy fatigue still plagues me. The nurse at my OB appointment yesterday assured me that that was normal for "older moms." Older moms?! Good grief, I just turned 30. But I know that she has a point. I remember the surge of energy I felt carrying Naomi during the second trimester when I was 22 years old. And when I popped out of bed and strolled the hospital halls two hours after giving birth, my OB just shook his head and said, "Youth was made to give birth." Apparently I don't qualify as youth anymore.

Toby's nap time used to be my prime homeschooling and housework time. Now I've decided that school is on summer vacation and the couch is my best friend. It probably doesn't help that this tiny baby acts more like a hamster on a wheel inside me. I swear this kid is burning energy faster than I can produce it. The OB had a hard time catching the baby still enough to listen to the heartbeat yesterday.

Emma also had another recheck with the neurologist yesterday. Thankfully, Matt's mom was able to watch the other kids, which lightened my load considerably. The neurologist reported that all of the blood work for the scary brain-wasting diseases had come back normal and that we were probably dealing with a one-time brain injury that happened sometime in the past, possibly birth, and that needs to be supported with appropriate therapies to help the brain compensate. She did order a 24 hour EEG on Emma to get a better idea of just how slow Emma's brain waves are, and under what circumstances. Apparently, they will hook Emma up at the hospital with all the wires on her brain, then put a cap over it and have her carry the computer around with her that records her brain waves for 24 hours. That insane fun is coming our way this August.

Today Emma had a recheck with the ENT who put the tubes in her ears last month. He had sampled some of her nasal tissues then and felt that they showed she had allergies. So her recheck today included 40 pin-prick allergy tests on her back for various environmental allergens. Thankfully, today was Matt's day off so I was able to devote my full attention to little Emma. She amazed the technician by not fighting or shedding a single tear through it all. She hardly made a peep, but to those who know Emma, this comes as no surprise. The tests showed that she is allergic to two kinds of mold and oak tree pollen, of all the weird things. I was just relieved that is wasn't dust and grass or something that would make me feel guilty for not vacuuming everyday. I think I can handle avoiding oak tree pollen.

Matt watched the three girls while I enjoyed a glorious two-hour nap this afternoon. Toby took a three hour nap, but wore himself out wrestling with his daddy this evening. He finished the evening by frantically running from room to room yelling, "I need my kiki! I need my sippy cup! I need milk! Oh, I'm so tired! Hurry! Hurry!" I shook my head and filled his cup and told him to go to bed if he was that tired. Instead, he ran full-force into the living room, flopped himself down on the carpet and shrieked out, "Help me! Help me! Oh, I'm so tired! Help me!" When he saw me laughing he grinned at my approval and continued to scream in terror as I helped him to his bed. The next time I want to drop over on my feet maybe I should flop on the floor and scream for someone to carry me to bed. It worked for Toby.

Those Bad Influences

2011-06-20T22:02:00.000-04:00

Tonight at dinner my family sat together eating taco salad and watching the neighbor kids climb the magnolia tree six feet from our kitchen window. The kids looked in and waved to my kids, who were much too amused to eat their taco salad. I don't mind the neighbors climbing the trees, it seems our yard belongs to the whole neighborhood, but I was tempted to draw the blinds on them at dinner time.

"I really do like the neighbor kids," I explained to Matt after the three girls had run out to join them. Toby stood on a chair at the kitchen window and sulked at having been kept inside. "They are nice to our kids. They take the time to include them in their games. They look out for their safety. It's just that sometimes they can be pretty rude to each other, and they use language that, while not necessarily foul, isn't something I want my kids picking up. Like when they were playing baseball and they told Hannah to kick the boys' butt."

"Kick boys' butt!" Toby chirped up from his window seat. "Kick boys' butt! Kick boys' butt!"

By the time I got the courage to look Matt in the eye he was nearly in tears from laughter. "You don't want the neighbor kids to teach them that language?" he asked, "I guess you don't need them too. Oh," he sighed, "the irony."

One Mom's Trash, Three Girls' Treasure

2011-06-20T17:24:00.000-04:00

When I laid Toby down for a nap on Saturday I noticed a pea-sized hole in his threadbare crib sheet. Apparently, after four-toddler's-worth of wear the T-shirt soft sheet couldn't hold its threads together any longer. When I retrieved Toby from his nap the hole was large enough to swallow the child. I suspect he had something to do with hastening its demise.

Today I nearly tossed the sheet in the garbage, but then I reconsidered. Three little girls eagerly set to work snipping the sheet to bits of cloth useful for jewelry, doll-clothes, and old-fashioned head-gear. My girls can spend day after day on craft projects now. Almost all of the toys are kept in the kids' bedroom, but we have an entire room downstairs devoted to homeschooling and crafts. Lately my girls have seen craft material in just about anything I try to put in the garbage. Empty toilet paper rolls, food wrappers, cereal boxes, and egg cartons now go into a giant craft-supply box, and I do my best to keep the girls supplied with construction paper, glue, and scotch tape. Last week Naomi spent three days creating an elaborate ship (the "Dawn Treader" from C.S. Lewis' Chronicles of Narnia) from two egg cartons, a few cereal boxes, and some yarn. They are their mother's girls. I seem to remember keeping a craft supply box myself and spending many good hours in creative play.

Today, after an hour of snipping and taping, Emma came to me proudly holding a mangled mass of old-sheet, elastic edging, and cardboard pieces scotched taped together. She held it up, grinning, and waited for my approving words. "Wow, Emma," I began, searching for the right praise, "you sure worked hard on that!......What is it?"

"I goh yo, (I don't know)" she answered pensively, "buh I in ih migh gur ouh goo be a gor-ay-oh! (but I think it might turn out to be a tor-na-do!"

"A tornado?!" I laughed. "You're making a tornado?"

She giggled and I giggled, and then we just laughed together. And to think, I almost put that sheet in the garbage.

The Approaching Crossroads

2011-06-16T20:16:00.000-04:00

I'm fifteen weeks pregnant today, and I've been feeling this little one flutter and kick for about a week now already. Of course it is faint, but this is certainly earlier than I've felt movement for any of my other pregnancies. If I had to place my bets, I would bet that this one is a boy, and that he's going to be a pretty good match for his big brother Toby.

Of course we won't know until the 20 week ultrasound, which is scheduled for July 19th. As the date moves closer I feel the same mix of excitement and apprehension that I felt before my ultrasound with Toby. So much is revealed at that appointment. It is like peering into the crystal ball and suddenly gaining visions of the future. In one word, "girl" or "boy," the future suddenly clarifies with pink dresses and fairy tales, or blue baseball caps and toy tractors. This is the moment so many parents can't wait for.

But for us, three out of four ultrasounds have revealed far scarier visions of the future. The most dreaded words, "echogenic kidneys" gave us a foggy glimpse of the endless blood draws, doctors appointments, strange neurological symptoms, and searching for answers we have lived out so far. And those words gesture to the hazy future still before us, filled with shadowy specters of racing to the hospital while a daughter vomits blood, months on dialysis while we search for a kidney donor, transplants, anti-rejection therapies, and early death.

At Toby's ultrasound my apprehension proved founded when the technician couldn't find his right kidney, and the fear that welled-up in me completely eclipsed what should have been a joyful moment: the announcement of our first son. So, as much as I long to know whether Toby's newest sibling will share his love of power tools or encourage his fetish with girls' shoes, I grow nervous as that date approaches. Not exceedingly so, I'm not much of a worrier by nature. I have repeatedly laid my children's lives and health in the hands of their creator, and I am at peace now with whatever he chooses to do with their lives. It is just that in that moment we stand at the divide between the sun-filled path of normal childhood, long-life, and grandchildren to come; and the shadowy, brier-lined path of disease. We are willing to hold the hand of our guide and travel either, but the heart does begin to pound as we strain to see which path he is stepping out on.

We'll reach that fork in the road in just under five weeks, and we'll walk that path when we come to it.

Remembering and Celebrating

2011-06-11T14:01:00.000-04:00

I spent this morning looking back through some of my previous entries that spoke of our journey raising Naomi like Willing to Try, When it Rains, Be Still My Soul, and Love Without Boundaries. I wanted to remember the journey so I could celebrate our progress to the fullest. It is strange how we can cry out to God in so much pain, but when his relief comes slowly and incrementally we can so easily forget to thank him. At first we don't thank him because the relief is so little, and by the end we don't thank him because we've forgotten the pain we were once in. Today I am setting up some stones of remembrance because I do not want to forget his deliverance.

Naomi was a fearful, angry baby, unable to sleep for more than twenty minutes at a time, and utterly unable to calm herself down once a fit had begun. She was a brilliant, but withdrawn toddler. She rarely made eye contact, refused to interact with others, and stuttered severely for two years as she struggled to get out long, complex, adult-like sentences. She was thrown into wild, uncontrollable tantrums at little things like her blankets not laying perfectly straight on her bed. She was unresponsive to discipline; it did nothing to curb her compulsions or end her tantrums. She could only function in the most structured and routine environment--the exact same activities in the exact same manner at the exact same time of day. Any deviation from the norm required extensive coaching beforehand on what Naomi should expect to happen and how we expected her to behave. Routine so ruled her world that after receiving a spanking for getting out of bed several nights in a row, she began to get out of bed each night and request her spanking. It actually upset her more if we didn't spank her.

When she was one and a half she tested at the cognitive level of a three year old, and when she was two she memorized the entirety of Psalm 1 with an elementary church program, but she refused to recite a word of it with her class. At two and a half she could sing her English, Greek, and Hebrew alphabets, would listen intently as we read to her for hours, but flew into a rage at the feeling of dry rice between her fingers.

When she was three we moved to a small Christian boarding school in Iowa. The other two children her age on campus would try repeatedly to get Naomi to play with them and Naomi would refuse to answer them or acknowledge their existence. She would spin incessantly in circles whenever music started playing, and Matt would have to carry her out of the church service screaming when we asked her to stop spinning in the aisles. One time she was spinning to a favorite CD in our kitchen when I left for a campus duty, and I found her still spinning when I returned an hour and a half later. Matt said she'd been there the whole time. Every day was one discipline battle after another. Some days I wondered if I would ever enjoy my daughter or if she would forever be locked in her own, defiant world.

Light began to shine on Naomi when she was four. I think the very predictable routine of campus life along with the limited number of people she interacted with day-in and day-out began to help her. Eventually those two other kids won their way into Naomi's life and she began to talk to them, and then to play near them, and eventually to play with them. She was happy that she finally had friends. She attended an elementary level art class once a week with a very understanding teacher and began to learn the rules of classroom interaction. She learned she could help with chores like folding laundry and emptying the dishwasher, and she began to spend hours working in kindergarten and first-grade workbooks. These accomplishments brought her great satisfaction and pride, and brought a great measure of relief to us. But then she would have episodes of being utterly irrational, unreasonable, and defiant no matter the cost to her. Nothing we did could break into that world, something held her mind captive.

Naomi had just turned five when the economy nose-dived, the boarding school enrollment dropped by two-thirds, our dormitory was closed, and we moved to live with Matt's parents. This sent her spiraling backwards. We decided to enroll her in kindergarten at the nearby public school knowing that being thrown into the ocean of social interaction would either sink her farther down or teach her to swim. Naomi was sent to the Principal's office only a few days into the school year because she refused to count buttons for the teacher. Whether the buttons were an offensive shape or size, or whether the activity just seemed too pejorative to Naomi we'll never know. We met with the teacher then, and gave her some tips for working with Naomi, and the two of them "clicked" after that. By the end of kindergarten Naomi was participating in group activities (most of the time), performing in class shows, and talking to other kids in the class freely. I held my breath that spring as Naomi was approached by a new child at a playground and asked to play. Naomi looked up at the boy, said, "Sure," and ran off happily to the slide with him. I could have cried at that milestone.

Then last summer she again spiraled downward. Her joints began to hurt, her frequent stomach aches intensified, and her tantrums grew more frequent and more violent. She was getting too big for me to physically control. She broke three support boards in her toddler bed from pounding her body down on it in rage. We learned quickly to confiscate her glasses at the beginning of a tantrum. When we got bunk beds for the girls Naomi would lay on the top bunk and kick the ceiling, screaming with all her might for over an hour. We would sit helplessly upstairs and wait for it to pass. Sometimes Matt tried holding her locked in his arms as she screamed and shook and kicked and foamed at the mouth just to keep her from hurting herself or others or property. She would burst blood vessels all over her face from her intense screaming. The tantrums became almost daily, especially if the routine changed or other children were around. I became convinced that we were dealing with far more than a "strong-willed" child or a discipline issue. I pushed Naomi's doctor for more tests and that is where my blog entries pick up last September with the diagnosis of Celiac disease, the introduction of a gluten-free and casein-free diet, and the beginning of improvement for Naomi.

The blog doesn't tell it all though. I didn't really mention that the tantrums grew far worse after the first week of diet change, or that her school teachers didn't have a clue what to do with her. She was far too academically advanced for special education, but she was causing enormous disruptions in the classroom and refusing to heed discipline. The tantrums finally made their way to school, something I had dreaded happening. Once, after she had refused to pack her backpack at the end of the day, Naomi's teacher left her alone in the classroom while she escorted the other children to the bus. When she returned she found Naomi had overturned desks and tables leaving the room an enormous mess. We had to discuss signing a waiver for a special education teacher to restrain Naomi if needed.

About this time we had to admit that Naomi was no longer thriving in the public school system, Matt was able to finally find a new job, we were able to move into our own home again, and things started to fall into place for Naomi. Having our own, calm, structured environment again; letting Naomi set the pace for her learning in home school; and making a few more dietary changes have made all the world of difference for Naomi. I want to tip my hat to a friend, Marlene, who sent me some gfcf cookbooks awhile back. One of the books on special diets for Autism and ADHD treatment helped me to understand Naomi better. It talked about how children who don't improve on gluten-free, casein-free diets likely have even more foods they are reacting too. It gave the analogy of a child sitting on six tacks, and how removing two of them wouldn't lessen their pain very much. From that point I've been searching for the remaining tacks. Amazing improvements came when I removed most soy, and finally all artificial food-dyes from Naomi's diet.

I've been hesitant to announce our success too publicly, for fear that Naomi will regress again, and I will have to admit I was wrong, but at this point the evidence is indisputable in my mind. As long as the diet is followed Naomi is engaged with her surroundings, capable of thinking logically, and generally well-behaved with a sweet disposition and a big heart. When I've let Naomi have dairy she now develops dark purple shiners under her eyes and has about 24 hours of low responsiveness, irrational thinking, and defiance. When Naomi consumes food dyes she has extremely aggressive behaviors, headaches, and joint pain within one to two hours that last for a few hours to a few days depending on the amount of dye consumed.

This is what I needed to remember in order to appreciate yesterday. Yesterday Naomi and her sisters enjoyed watching me make my own food dye from mashed, strained, boiled-down cherry juice. They helped me top the gluten-free, casein-free, artificial-dye-free birthday cake with fresh cherry and kiwi slices. Naomi offered to unload the dishwasher for me as we cleaned up the kitchen together. And then we attended the first family birthday party ever that included no temper tantrums, no headaches, and no joint pain. Naomi played well with her cousins. When they irritated her she let it slide instead of launching World War III. She even played happily with a neighbor girl who came to join the party. She went to bed tired and fulfilled. There were days last year when I wondered if this day would ever come. I went to bed quietly thanking God.

...they were at their wits’ end.
²⁸ Then they cried out to the LORD in their trouble, and he brought them out of their distress.
²⁹ He stilled the storm to a whisper;
the waves of the sea were hushed.
³⁰ They were glad when it grew calm,
and he guided them to their desired haven.
³¹ Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind.
³² Let them exalt him in the assembly of the people
and praise him in the council of the elders.

--Psalm 107:27-32

Pint-sized and In Charge

2011-06-09T11:28:00.001-04:00

Toby's verbal skills have exploded with the gusto of Mt. Saint Helens, and his mushroom-cloud ego is threatening to fill this house. He's got his eye on being crowned "chattiest and sassiest of the Eby house," a title Hannah has held unchallenged for five years now, but she may soon have to relinquish.

"Get up, Mommy!" Toby yells from his crib in the morning, "Get up and change my diaper! I'm all wet!" I drag myself from bed to greet him and his sisters, and turn off the white noise machine in their room. "Don't turn off noise 'chine!" Toby scowls at me. "Don't wipe my bottom!" he argues as I clean him up.

After spilling a bowl of Cinnamon Chex on the kitchen floor at breakfast, he looks at the floor, disgusted, and orders, "That's a big mess! Get a broom for the floor, Mommy!" When I sweep up the crumbs, he asserts that his judgement was correct with, "See?"

He no longer watches inquisitively as I make lunch; he tells me how to do it. "Get a can opener for that can! Don't cut the strawberries! Don't put ketchup on my plate!" I know it's time to curb his little bossy tendencies, but the truth is that I still find them more amusing than annoying, especially when his commands come out a little mixed up. This morning he ordered Hannah to come to breakfast with, "Hannah! It's dinner time for breakfast, Hannah!" When we all chuckled at that he grinned with pride and yelled it again, just a little louder for effect. Glancing at me for approval he added, "I funny."

At times he loses his in-control attitude. He's developed a new fear of the roaring garbage truck that picks up the dumpster outside our back door. He actually screamed and tried to run from the truck that had quietly fascinated him just last week. And sometimes his vocabulary still hits a weak spot, like when he tripped over Emma and cried, "I fell down...off of Emma."

Yesterday, when Matt came home from work and caught him wearing Hannah's dress shoes again, Matt sighed, "Toby, are you a girl or a boy?"

"I a pretty girl!" Toby replied, then, seeing our
laughter he corrected himself, "a...a...a pretty boy!" Next word to add to his vocabulary: handsome.

Sometimes it's hard to take him seriously, like when he pulls my socks over his hands up to his elbows and yells out, "Bye! See ooh yater! I gonna get some potatoes!" And occasionally his jargon is so cryptic I haven't a clue what he's talking about, like when I caught him with a bag of cookies and he explained, "This is my message for January." Perhaps it was his plan just to befuddle me, because I clearly couldn't punish him after such an explanation.

He knows he's got us in the palm of his hand. It's all a part of his plan to win our hearts, and he has been overwhelmingly victorious.

Summer Chop Shop

2011-06-09T09:55:00.000-04:00

Once a year, in May or early June, the time comes to rid our house of the extra hair that has accumulated over the winter. I love my girls' long hair, but their fussing at brushing time grows with each inch on their head, and it's just too hot and impractical in the summer. I find myself dreading swimming because of all the work that goes with it and the hair combing afterward. So yesterday I put Toby down for a nap, washed three heads of hair, and started chopping.

I was quite pleased with this year's results, considering my only training is studying how the girls at Great Clips or Cost Cutters cut my hair each year. And while Matt was tucking the kids in bed last night I rewarded myself with a trip to a Great Clips $5 hair cut sale. After I buzz-cut Toby's hair today we'll be all ready for summer fun.

Nature Hike

2011-06-02T11:48:00.000-04:00

We haven't yet gotten any window air conditioners for this house. It actually stays quite cool with all the shade around us if we can get the house cool at night. But it didn't cool down Monday night, and Tuesday it was over 90 with choking humidity. That was enough of a spur in my side for me to dig out the old, broken screen door from the basement. Someone had apparently ripped the bottom of the screen back in order to climb into a locked house. I spent a good half-hour stretching the screen and re-tacking it down properly. Then I vacuumed the cobwebs and wiped the door clean and hung it on our back door. After the addtion of a few duct-tape patches, the fresh air came in while the bugs stayed out.

We managed to live through Tuesday with the help of six fans, as long as I didn't wash any dishes, run any laundry, or cook any food. When the cool, fresh air came in my bedroom window yesteday morning, I sprang to life. I had a lot of dishes, laundry, and cooking to do! After the house was clean, I set to work baking some gf rhubarb muffins, preheating the oven, of course, while I mixed them up. After a good fifteen minutes of preheat I opened the oven and set the muffins on a cold oven shelf, then was suddenly overwhelmed by the smell of gas. The fan I had pointed on me in the kitchen had blown out the pilot light that our ancient oven depends on. I closed the oven quickly, turned it off and waited a few minutes for that round of gas to dissipate, then left the door open to let the gas out. Within a few minutes the gas smell had blown out the open windows. I called my landlady who agreed to send her husband out to light the pilot that evening (I figured I'd probably blow up the house if I tried). Then I trecked down the hill to our nearest neighbors who were kind enough to let me bake the muffins in their oven.

Seeing that my work was done, and the day was still gorgeous I announced to the kids that we'd be going on a nature hike that evening if they got all their school work done and picked up their things. School and cleanup has never gone so smoothly! We packed a picinic dinner and a bottle of bug spray, then headed out as soon as Matt got home from work.

Naomi and Hannah rode scooters while the path was paved, then folded the scooters, put them in the stroller, and walked, ran, and skipped alongside Emma and Toby riding in the red wagon. "Mommy, what's that good smell?!" Hannah asked, taking as deep a breath as her little lungs could hold.

"That's fresh air, Hannah," I chuckled, "It's trees, and flowers, and grass, and wind."

"Mmmm, it smells good!" she glowed, then skipped happily away. But her mood quickly dipped when we didn't immediately find the perfect picnic spot. "I'm so tired!" she whined. "I want to stop now. This is too much walking. Oh, oh, ohhhhh," she moaned, "I can't walk any more."

"See bicycle!" Toby announced cheefully as a rider whizzed by us, "Go fast!"

Matt agreed with Hannah that it was time to eat, so we stopped at a bench along the trail and enjoyed our dinner while we watched the other people pass by. And as soon as a little sugar hit her brain, Hannah was again basking in the glory of nature. "It's sooo pretty out here, Mommy," she swooned, "this is just the kind of dinner I like! I like to eat outside and see the flowers! Oh, thank you, Mommy for taking us on a nature hike!"

"I thought you were too tired," I probed.

"Well," she thought out loud, "I was...but now I'm happy again."

After returning to the trail head, the kids played awhile at a playground until the sun sank behind the trees, and the air turned cool. We stayed out entirely too late, and then had to bathe all the kids to rid them of bug spray. It was after 10:00 when they were finally tucked in bed, but I guess that's what summers are made of: cool evenings outside, picnics, bug spray, late bedtimes, and priceless memories.

Strangely Normal

2011-05-26T21:31:00.000-04:00

I don't have all that much to report, nothing exceptionally funny or cute or tragic in the last week and a half. It's sort of a strange feeling. But I thought someone out there might be wondering what's up with us, so here goes.

I've been busy. The first-trimester pregnancy nausea has finally almost disappeared, and the fatigue lets up for a break here and there. During those moments of renewed energy I've been attempting to tackle all the projects that have been put on hold for the last six weeks: cleaning, shopping, cooking real meals, and the monumental task of packing up the kids' winter clothes and unpacking their summer clothes. Next up on my list: unpacking my maternity clothes. I've put that one off for awhile since most of my maternity wardrobe was out-of-date when it was handed down to me over seven years ago. But my OB told me today that I was measuring 16 weeks along even though I'm only 12 (which I assured him was normal for me), so there's no fighting the elastic waist-band at this point.

Wardrobe changes have also been on Toby's mind lately. He has quite a developed sense of fashion. Along with his staple truck shoes, he has now added a Lightning McQueen baseball hat, which must be worn on his head, backwards, at all times. Often he accentuates his outfit with a pair of red mittens which his great-grandmother knitted him for Christmas. "Got my HAT, and my TRUCK SHOES, and my MITTENS!" he will announce proudly. Upon waking in the morning, if any of these items has gone missing overnight, he will frantically wail, "Need my HAT! Where's my HAT go?!" until I stumble out of bed and return the missing item.

Last Thursday I took Naomi to see the rheumatologist which we'd waited two months to see, and it was really an utter disappointment. He didn't see signs of joint damage and she wasn't in any pain at the moment, in fact she hadn't had much joint pain in several weeks, so about the best he could do was to tell me to call the next time she was very stiff and sore to see if they could run any blood work at that time. However, this seeming brick-wall of unhelpfulness set me re-thinking Naomi's joint pain. If it isn't arthritis, what the heck is it? Because I know it is real.

Coinciding with this re-thinking was Naomi's seventh birthday party the very next day, and once again she had horrible joint pain that evening. That makes four out of four birthday parties in the last three months that have coincided with severe joint pain for Naomi. This coincidence was even more striking since she hadn't had any joint pain for several weeks. So I thought through the birthday party diet once more: gf cake, soy ice cream, Sprite. I knew it wasn't the Sprite, since she'd had that a few other times recently with no pain, and this party Naomi didn't like the new flavor of soy ice cream and ate only a taste of it. Then it struck me: the icing on the cake is always loaded with dyes. I had begun to notice a connection between Naomi eating dyes and bizarre behaviors, and so I had recently cut back on them, but this was the first time that I made the connection between dyes and her joint pain and headaches.

Thinking back, I realized that Naomi's most horrible joint-pain episode happened on March 7th, the day after Hannah's 5th birthday party. I had made a mistake on that cake too. Instead of buying frosting in a writable tube, I had accidentally purchased gel dyes in identical tubes. When I put the flowers on Hannah's cake I wondered why the "neon pink" tube looked more black on the cake, until Naomi bit into a black flower and her entire mouth turned neon pink...and fingers, and face, and everything else she touched. She must have consumed an enormous amount of red food dye that evening, and I am nearly convinced that she suffered for days from that mistake. Around that time, in an attempt to encourage Naomi to drink more rice milk I had conceded to adding Strawberry Nesquick to one glass each afternoon. This would easily explain why her joint pain and headaches seemed to come nearly every evening. I had cut out the Strawberry Nesquick a few weeks ago, realizing it was affecting behavior in the evening, and that was the same time the joint pain and headaches seemed to ease.

Naomi has consumed zero food dyes in the last week and she has been pain free. The evidence, in my mind, is overwhelming, but I know that I can be eternally optimistic, and I have been wrong multiple times before. Time shall tell, but I can hope.

Dear Little Emma had a second ear-tube surgery this past Monday morning, and her uncanny calmness that morning has begun to worry me. She sat listlessly in the bed, seeming not to notice the nurses taking her blood pressure or temperature. She stared blankly at the cartoons on TV while we waited, but didn't really watch them. When the nurse told me she was about to give Emma some Versed to help her stay calm when they took her from me, I assured the nurse that wouldn't be necessary. Later, seeing the blank expression on her face during the pre-op consult, the doctor thought she had had her Versed already. "Nope," I said cheerily, "she's just always a laid-back kid." But I was beginning to wonder why she seemed to be permanently drugged.

Emma didn't make a peep as they wheeled her away from me, nor as she woke in the recovery room. All around me I could hear children screaming, but Emma sat sweetly and quietly in her bed as the nurse wheeled her into the room to see me. "She has just been a star!" the nurse raved, "If all our kids were this good my job would be a whole lot easier!"

"Yeah, she's my sweetheart," I agreed. Emma did smile at me then and reach for a hug, a small sign of life. Her minor lingering cough from a week-old cold suddenly worsened after anesthesia and her oxygen dropped and hung around 90 percent for a good hour. An albuterol nebulizer treatment had no effect. Finally, Emma announced that she was hungry, and the nurse tentatively gave her a chocolate muffin. "I know her oxygen's going to drop even more when she eats," the nurse warned. But food seemed to have the exact opposite effect. Emma immediately came to life, and devoured the muffin. She must have started breathing deeper too, because the oxygen level finally climbed to around 95 percent, and we were discharged. She has always liked her food. As we were leaving I asked her if her ears felt better, and she thought a moment, then smiled, "Yeah."

And what can I say for Hannah? She's a ham of a five year old, and still supplies a good portion of my daily laughs. Maybe now that things have settled a little I can take the time to write down more Hannah-isms.

Even as I heard baby number 5's heart beat today, I wonder what he or she will bring to this family. Each of my children are so unique, I always have a hard time imagining what another one will be like. It's pointless, because I would always be wrong anyway. Who could have imagined Naomi, Hannah, Emma, and Toby? Only God.

Toby's Quest for the First Cause

2011-05-16T15:38:00.000-04:00

Somewhere around age three Naomi and Hannah each began occasionally asking the question, "Why?" It was sporadic, and appropriate for certain circumstances, and a thorough answer would usually satisfy their thirst to know. To my recollection the question, "Why?" has never come out of Emma's mouth.

Tomorrow Toby will turn two years, three months old, and his new favorite word is already, "Why?" The first time I heard him ask it, about a week ago, I couldn't believe he really knew what he was asking, but he did. And now my days are filled trying to give him short, concise answers or long, complicated answers, but nothing satisfies this boy's thirst for knowledge.

"No, Toby," I'll say as he scrambles into the minivan's driver's seat for the zillionth time and clutches the steering wheel with all his might, "you sit back here, in Toby's car seat."

He will look up at me with big, brown, wondering eyes, and ask in the sweetest, most honest voice, "Why? Why, Mommy?"

"Because Mommy has to drive the van, you're not old enough yet."

"Why? Why, Mommy, Why?"

It doesn't matter what I answer, he will continue asking and asking. He used to go to bed so peacefully, but now when I announce that it's bedtime he answers, "Why, Mommy?"

"Because it's late at night, and you're getting sleepy."

"Why, Mommy?"

"Because the sun is going down."

"Why?"

"Because the earth is rotating."

"Why, why, Mommy, why?"

Until I eventually am backed into either, "Because I said so," or "Because that's the way God made it, " or simply, "enough, Toby, you can't possibly understand right now, just go to sleep."

Sometimes I crawl into bed and realize my mind can do the same thing..."Why? Why, God, does my family seem more like a science experiment than household? Why, God, did I have to tell Naomi I couldn't stop her pain? Why, does everything have to be so hard for Emma? Why, God, Why?" And maybe God sent me Toby, just so I could hear God answer me through my own answers to my child, "Enough, you can't possibly understand right now, just go to sleep."

The Hazy Unknown

2011-05-13T16:45:00.003-04:00

Yesterday, the Ear Nose Throat specialist confirmed that Emma's eardrums were still completely flat (unable to vibrate with sound because of the fluid filling her inner ears), and it's been three weeks since the last test. He said he was really surprised that she could hear as well as she did on the hearing test, and that if an adult woke up with their ears feeling like Emma's they'd be calling his office and begging him to help them. Emma puts up with so much so silently, I would have had no clue she had trouble hearing except that she's been putting her fingers in and out of her ears. Mr. ENT agreed that putting a second set of ear tubes into Emma's ears ASAP was a "no-brainer" especially with her speech issues.

This morning the neurologist was able to obtain a copy of Emma's brain MRI, and I realized that the nurse who told me the results over the phone two months ago misinterpreted the results. The nurse had said they'd seen "delayed myelination" which is common in developmentally delayed children, but the MRI report read, "moderate loss of white matter volume," which, according to the neurologist, is completely different than delayed myelination. I couldn't press for lots of details, but she said Emma's loss of white matter volume along with the abnormally slow EEG basically means that Emma has mild "cerebral dysfunction." When I pressed her as to what that meant she said, "brain damage,"--not exactly the two words any parent wants to hear, maybe we should've stuck with "cerebral dysfunction."

Basically, the two big questions we are seeking to answer now are, "Did the brain damage occur in the past as a one time event or is it a degenerative disorder that is worsening?" and, "What caused or is causing the brain damage?" It is possible that the brain formed incorrectly due to a genetic defect. It is possible that her brain suffered damage from mild oxygen deprivation in the womb or during labor. Or, it is possible that there is a genetic defect causing a metabolic disorder (the way the body breaks down and uses food) which may cause a deficit or build up of certain chemicals that interfere with the way the brain functions. One group of genetic mutations causing metabolic disorders that lead to the progressive loss of white matter are called leukodystrophies, something the neurologist mentioned they would check for. Here is an excerpt from the National Institutes of Health website on leukodystrophies:

“The leukodystrophies are rare diseases that affect the cells of the brain. Specifically, the diseases affect the myelin sheath, the material that surrounds and protects nerve cells. Damage to this sheath slows down or blocks messages between the brain and the rest of the body. This leads to problems with

Movement
Speaking
Vision
Hearing
Mental and physical development

Most of the leukodystrophies are genetic. They usually appear during infancy or childhood. They can be hard to detect early because children seem healthy at first. However, symptoms gradually get worse over time. There are no cures for any of the leukodystrophies. Medicines, speech therapy and physical therapy might help with symptoms. Researchers are testing bone marrow transplantation as a treatment for some of the leukodystrophies.”

More blood was drawn today to check for signs of a metabolic disorder, and we will repeat the brain MRI and EEG in September to see if the brain is stable or worsening. In the meantime Emma needs to see a speech pathologist to see if we can get her some more intensive speech therapy and a physical therapist to evaluate if she would benefit from physical therapy.

What all this means for little Emma is a frustrating shade of grey right now, something Crayola would probably name "hazy unknown." It's possible that her eyesight has now been corrected, her ear tubes will help her hear clearly again, and her brain will work hard to compensate, with therapy, for the damage it has been assaulted with. It's possible that her speech and motor skills will improve with hard work and time, that a future kidney transplant is the worst of what she's facing, and that her future is quite bright. It's also possible that she is facing a degenerative disorder that is causing her eyesight and brain function to deteriorate, and that there will be little we can do, but watch. But I've learned by now that venturing into the hazy unknown only causes me more injury in the end, it's best to sit where we are for now and wait for the fog to lift.

Right now Emma is sitting with her sisters, working her little heart out to trace the lines in her preschool workbook while she hums a happy, though unintelligible song. Right now is not a bad place to be, so that's where we'll stay.

I heard this song on the radio on the way to Emma's neurologist appointment, and quietly shed a couple tears while Toby gleefully announced every cow and horse he saw along the road. Maybe it will bless your heart too.