Sunday, October 31, 2010

The Tale of the Lame Fairy, Bouncing Ballerina, Timid Princess, and Greedy Tiger

Why do I feel compelled to dress my children in costumes and drag them around the block, collecting bags of candy, each fall. Is it just that it's a cultural norm? Is it because they look so cute in those costumes? Is it because I have happy memories of dressing up and hording candy as a child? Is it because the neighbors invited us to go with them, and my children and Matt and I all need the socialization? Or is it that I feel my children are already deprived of so much that is "normal" in childhood because of their health conditions, so I want to give them any of the experiences that their peers have if I possibly can. They do need to have happy memories of more than doctors and ultrasounds and biopsies. Or maybe I just like raiding the candy stash afterward.

I do not like the roots of the "Halloween" celebration. I do not agree with the celebration of that which is evil, grotesque, and morbid, but I know that for the vast majority of families out there it is simply a night to dress children in cute costumes and hand out candy. So, probably for some combination of the above reasons, I spent yesterday helping the girls go through our dress-up clothes and pick out suitable costumes. We enjoyed a dinner with the neighbors (with our own gluten-free food of course) then began pulling on layers of tights and shirts and sparkly skirts. Just after 5:00 we headed down the street in the amazingly mild fall sunshine.

Our neighborhood must be the favored trick-or-treating neighborhood for the entire county. The streets were filled with a menagerie of ballerinas and lady-bugs, goblins and ghouls, all frantically hurrying from house to house. The neighbor kids we were following were older and faster than mine. Naomi and Hannah ran after them giggling, but Emma resisted being rushed, and Toby had much more to explore than the next house's front-door. Matt carried Toby from house to house as I pulled Emma's arm. She stared wide-eyed at the freakish faces passing us, and whined at having to walk so quickly.

"Now just take one,"a kind, naive lady sweetly advised Toby, holding out a large bowl of candy. Toby took one, placed it in his bag, then took another and reached for a third. "Mommy," Naomi whined, half-way down our street, "my knee's hurting. Can you carry me?" Most of Naomi's joint pain has vanished since going gluten-free, but it occasionally resurfaces, and it struck her nearly lame last night. I ended up carrying Toby and dragging Emma while Matt carried Naomi. "Why didn't we bring the wagon?" Matt called back to me over the crowd. "I don't know, remind me next year," I yelled back, nearly panting for breath. We decided that one trip up and down the street was more than enough this year.

Today I set up the "Candy Trade-in Shop" and went through all the kids' candy piece-by-piece, searching for gluten and dairy. Any piece found to contain gluten went into a pile to donate to Uncle Phil. Any piece containing dairy Naomi and Toby had to trade in, but Hannah and Emma could keep. I had a stash of gluten-free, dairy free candy that the kids chose from each time I confiscated one of their hard-earned treasures. In the end, each child has a Ziploc bag full diet-approved treats and, hopefully, a mind full of happy memories. They better.

Friday, October 29, 2010

Cat-O-Lantern

"We've decided what we want carved on our pumpkins," Naomi announced several weeks ago, "We want a flower on one and a cat on the other." I do not spoil my children, I certainly do not cater to their every whim, but when I've decided to do something special for them, like carving pumpkins, I do hate to let them down. But a flower and a cat? I decided to take a wait-and-see approach, hoping that perhaps they would take an interest in geometric shapes, say a triangle and a rectangle?

Tonight, the night before trick-or-treating, I had delayed all I could, and the girls' desire for a flower and a cat stood firm. So I rolled up my sleeves, picked out the thinnest knife I could find, and gathered the girls around. Toby was also interested in the knives and the guts of the pumpkin, but he lost the privilege of watching after he head-butted the pumpkin I was carving. One-and-a-half hours later three excited little girls stood in awe of the beautiful jack-o-lanterns they had dared to dream up. "I knew you would finally carve these pumpkins and they would look like this," Hannah sighed as if she were reading the last sweet lines of a happy fairy tale, "and now I'm kind of smiling because I'm happy."

Despite my initial qualms, and a freshly flared up sore wrist, I'm pretty proud of myself too.

Thursday, October 28, 2010

Please Restore, Don't Add More

I was more than a little perturbed to discover a large streak of Desitin on the living room carpet this afternoon. After some interrogation, it was discovered that Hannah had decided to attempt to use the Desitin to glue some papers together. Given this usage it is not at all surprising that some ended up on the carpet. Hannah was sentenced by the committee for restorative justice to scrub the Desitin with a wet rag while I went to get some carpet cleaner.

Upon returning to the living room with the cleaner, I found Hannah with the tube of Desitin, lid open, poised to squirt some more out on the carpet. "Hannah!" I yelled, "What in the world are you doing?!" "Well...I," the timid Hannah replied, "I was just going to put some more on so I can see where to clean. I can't see it anymore."

I have decided against using restorative justice for the time being. If more Desitin shows up on the carpet Hannah will be sentenced to stay in her bed until she can demonstrate evidence of having acquired common sense.

Wednesday, October 27, 2010

Ordinary Miracle

"It seems so exceptional that things just work out after all. It's just another ordinary miracle today." --Sara Mclachlan

Have you ever gone grocery shopping at 11:00 at night and seen the irresponsible mothers who are carting their tired toddler around in the shopping cart. The poor kid's eyes are dark and drooping, their head is a lead weight on their shoulders, and you think, "Why in the world isn't that poor baby in bed?" I have, and now I'm humbled.

In preparation for Toby's MRI, I was instructed to only let him have five hours of sleep the night before. They wanted him to be so thoroughly exhausted that he would drop off to sleep with just a touch of sedation. He also was not allowed anything to eat or drink for six hours before the procedure, so I knew I didn't want to wake him early and have him screaming for his morning juice. This meant waking him at 6:30am, which translated into keeping him up until 1:30am! Quite an undertaking. He was thrilled until about 10:00pm, when the sleepies really set in. So we went to the grocery store and rode the one-cent horse ride, and I got a little shopping done too. Of course people stared and wondered what sort of mother I was, and I felt like telling them to mind their own business, "He has an M--R--I to-mor-row! I'm not a bad mom!" OK, I will never think bad thoughts about the other moms at the grocery store again, maybe they have a strange explanation too.

Toby was recharged by his stint as "cowboy of the grocery store," and we were also blessed to see the full length of a "CHOO-CHHOOOOO!" at the crossing by our house. Another block down the road their was a fire-truck parked with it's lights flashing against the dark sky. By the time we reached home around 11:30pm there was enough adrenaline in Toby's system to support him for another hour. About 12:45am Toby and I were both running on empty and I decided to put him down--close enough to 1:30am for me.

We were up around 6:30 and checked in at the hospital by 7:30am. I guess the person before Toby was claustrophobic, so that pushed Toby's appointment back some. Finally at 8:30, when he was reaching the end of his tired, thirsty, hungry patience we were called back. He tolerated the stickers on his chest, but certainly not the IV placement. Unfortunately he did not drift peacefully to sleep with a touch of sedation either. I guess some kids choose to fight rather than succumb, and Toby fought as if it were his dying breath: flailing, squalling, back-arching, and thrashing. It was all we could do to keep the IV in. He finally succumbed after about 15 minutes of fury. Then we were left alone in the cold white room, Toby limp and hooked to monitors, and me in a chair beside him with headphones and the latest National Geographic.

Somehow after all the chaos it was eerily still in that room. I suddenly remembered why we came: the unmistakable, inexplicable lumps all over his little head. It was hard not to let my imagination go. What were they seeing inside his head right now? What if they're seeing masses, tumors, lesions? What would that mean for Toby and for our lives? Was that worry I detected in the technician's voice when he spoke to me over the headset just now? How would I respond if it turned out to be the worst? Would I still trust God? Would I still praise him? Somehow I knew that I would. The technicians were frustratingly poker-faced as they unhooked Toby's equipment and woke him from sedation. Then I was sent home with a furious, delirious toddler, a lot of unanswered questions, and more fear than I had felt in a long time.

Toby was inconsolable, even at home. He looked heavily drugged. He couldn't stand up, and he wouldn't sit still or lie down. I'm not sure he even knew where he was or who we were for about an hour. Matt and I took turns holding him and trying to calm him, until he finally sat in a high chair and had some lunch, then gave in to sleep around 1:00pm. He took a five-hour nap which was a blessing to my weary body, but left more quiet time for me to worry. When the MRI was days away I had put the potential result out of my mind fairly easily, but now that I knew the phone could ring any minute with news that would change our lives I began to feel weak, even panicky, something my stable psyche is not at all accustomed to.

I called the pediatrician's office at 3:00pm and again at 4:00, no results. I had to collect myself to get Naomi from the school bus, put some dinner on the table, and prepare for a parent-teacher conference with Naomi's teacher that evening. Matt and I took our cell-phone with us to the conference when we left at 6:15pm, but in an all-cement building we missed the phone call from the pediatrician. The phone vibrated with a message as we left. My heart began to pound as I listened to the message. I recognized the voice of the nurse as she spoke, "The official report is still unavailable, but Dr. A called and spoke with the radiologist. He said the brain and skull were normal." I sighed and whispered, "normal," to Matt who was waiting anxiously for my word, and suddenly the sky was blue again.

After a drought the rain feels cooler, after the clouds the sun shines brighter, after the winter the flowers smell fresher, and after the long walk up Mount Moriah the angel's voice was never sweeter, "Now I know that you fear God because you have not withheld from me your son, your only son." You may think I'm being melodramatic, but I think most mothers would have feared for their son's life in my situation, and I felt as if I had received him back from the dead. Toby is healthy! There will be no brain surgery, no chemotherapy, just normal toddler-hood. Did I take that for granted before? I don't now.

Again and again in my life I am faced with the question: would I give my children up if that were God's purpose for their life? How would I react if he wanted to teach others through their suffering or death? It is an easier question to answer in the abstract, much more difficult when your sweet child is lying limply inside an MRI machine with lumps on their head. But by his grace I have answered back, "Lord, not my will, but yours be done," and in his mercy he has handed my children back to me each time as if to say, "just checking." I am grateful, truly. If I hadn't been through yesterday I wouldn't appreciate today as much. It may seem ordinary to you, it is a miracle to me, but much of our lives are daily ordinary miracles aren't they?

Monday, October 25, 2010

Naomi, Emma, and Toby's Story

I have written a summary of some of the prenatal fears we faced with Naomi, Emma, and Toby for Prenatal Partners for Life. It will be included on their website at some point under "Stories" and then "Kidney Defects." I thought I would share it here as well.


Naomi, Emma, and Toby’s Story

I was twenty-two years old when my obstetrician looked me in the eyes and said bluntly, “I’m going to send you to a specialist. The ultrasound showed some abnormalities.” My husband and I were shocked and skeptical. We questioned her more closely about the abnormalities. “It just says, ‘increased prominence of echogenicty of both kidneys,’” she shrugged, handing the radiologist’s report to me. The OB didn’t have any guesses as to what that meant, and offered no  hope of remedying the problem beyond the cold suggestion, “You could choose to terminate.”

Naomi Katherine Eby arrived just before 37 weeks gestation with a visibly distended abdomen and club feet. We did not receive the diagnosis of Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis until three and a half years later, because Naomi didn’t fit the classic profile. Most babies who are diagnosed with ARPKD/CHF will die because their lungs did not have enough room or enough amniotic fluid to develop properly. In God’s mercy, Naomi’s kidneys, though filled with cysts, were only mildly enlarged, leaving enough room for her lungs to develop properly. And though the club feet indicate that at some point the amniotic fluid level around Naomi was low, amazingly, her lung function was not at all impaired. Little Naomi was allowed to room in with me the first night, but when blood tests showed a climbing creatinine level, indicating deteriorating kidney function, she was moved to intensive care. The doctors began to discuss dialysis with us. I was forced to leave my baby at the hospital, not knowing when, how, or if she would come home with us. Amazingly, though her creatinine climbed to 2.3, it leveled off there when she was four days old, and slowly began to drop. With more than enough kidney function to lead a healthy life, Naomi was discharged when she was five days old.

Naomi’s nephrologist and two geneticists assured us that whatever Naomi had, it was a fluke and would not repeat itself with any other children we had. Our second daughter, Hannah, was born completely healthy twenty-one months after Naomi, so I was stunned when, during my third pregnancy, the sonographer looked at me softly and said, “The baby has echogenic kidneys.” Fearing a more grim outcome for our third daughter I sought comfort in choosing a name for her, it felt like something I could control in a rolling ocean of emotions. I sunk my anchor in the knowledge that God was in control and that he brings suffering to our lives for a purpose, and we chose the name Emma Peace, which means “embracing everything (in) peace.”

My pregnancy with Emma was more complicated. She accumulated a large amount of fluid in her abdomen, called ascites. I accumulated far too much amniotic fluid, called polyhydramnios. Her heart rate remained at a steady 120 beats/min, refusing to accelerate with movement or startling, which concerned the doctors. The perinatalogist cautiously mentioned the possibility of terminating, but didn’t mention that again after we told him that was absolutely not an option. I was subjected to two amniocentisis, one for chromosomal testing, and one to drain off one of the four liters of extra fluid I was carrying because I was beginning to have trouble breathing with an ocean of water pressing on my lungs. My labor with Emma was induced at just over 36 weeks because she showed clear distress, but once again we were graced with a miracle. Emma’s lungs functioned normally, her creatinine never rose. She was kept for eight days in intensive care, then released to a near normal childhood.

It was when Emma was one month old that we finally received the diagnosis for both girls of ARPKD/CHF. Though we weren’t exactly asking for another baby immediately after this experience God sent another one to us when Emma was eight months old. I dreaded the 20 week ultrasound, and felt like clubbing the two sonographers who stood beside me arguing about whether or not my baby boy had two kidneys. Back to the specialists we went, and I went back to the foundation I had found so secure before, naming this baby Tobiah Matthew, which means, “The Lord is good, gift of God.” At least I was greeted with the loving, open arms of the same perinatologist who had cared for Emma. She had to assure me repeatedly that Tobiah’s good kidney was completely normal and showed no signs of being cystic like Naomi and Emma’s. His right kidney was shrunken and stuck to the bottom of his left. It probably wouldn’t functional well, if at all, but his left one was more than he needed to lead a healthy life.

Baby Toby did struggle with inexplicably high potassium levels requiring some medication, at least a hundred blood-draws, and one overnight hospital stay during his first year of life. But this problem vanished as strangely as it had come, around the time he turned one.

Naomi is now six years old. She has experienced mild developmental delays, wore braces on her feet for 18 months, underwent surgery for crossed-eyes when she was two, and has recently been diagnosed with Celiac disease, but what a blessing she is to us! She is a bright, adorable six-year-old with a soft heart for others. Emma is now three, she has experienced some speech and developmental delays, but is as bright and sweet as her sister. Toby is as full of life and vigor as any 20-month-old could be. Naomi and Emma have learned that periodic blood-draws, ultrasounds, and doctors’ visits are a way of life, but really not a bad life. Naomi is enrolled in the high-ability program of her school and matter-of-factly answers the questions of other curious first graders who want to know why her belly is so big. ARPKD/CHF is a degenerative condition—the fibrosis in the liver and the cysts in the kidneys will continue to worsen as they grow. The girls will probably face life-threatening internal bleeding (the main complication of the liver fibrosis), as well as kidney transplants at some point in their life. They may not be able to carry children. They probably will not live to a normal life expectancy. The path we walk is lined with fear and sorrow, but there is far more joy and thankfulness growing along the way, if we will stop to receive it.

To all the parents who receive the devastating news that their unborn baby is not healthy I would offer these words: please give your baby the chance to live to the end of his or her natural life. Give yourself the chance to offer your baby love, comfort, and life. Many times the doctors are right and the outcome is grave—please offer your baby a dignified death and offer your family memories of your baby’s brief life. But sometimes the doctors are wrong, and they are all too quick to suggest termination of pregnancy. My children are proof of that. There is a grace in receiving the unique children sent our way. There is joy in seeing the blessing they bring, even mingled with pain. In our effort to avoid suffering we all too often close ourselves off from the blessing these children bring. We are all too quick to label as punishment that which God means as a blessing. Sometimes grace comes thickly veiled in tears.

Sunday, October 24, 2010

Community

Among the many things we love about our church are the small, close-knit atmosphere and the frequent fellowship meals. Our church family of about forty meets every-other Sunday for dinner after the morning service. The kids run around with each other in the large basement while the adults warm the casseroles, set out the fruit salads, and catch up on each other's lives. I do try to keep an eye on my children, but it gets difficult to count all four heads bobbing among the crowd while checking to see if my hot dish is indeed hot.

Once last May, Emma entered the women's bathroom in the dark, wandered into the shower and actually managed to pull the shower handle! (For full story click here and scroll down to Little Miss Independent Gets a Shock dated 5/10/10.) But the reassuring thing is that there are forty-some other pairs of eyes to help watch my children and return them to me, even if slightly wet from a cold shower.

"No, Toby! Hot!" I warned today as he wandered near the oven. I returned to my conversation, but had to break it again just a minute later as Toby stood gazing at the full coffee-pot. "No, Toby! Hot!" I yelled across the room. He reluctantly wandered away from danger and out of my line of sight. Several minutes later a young man in the church carried him over and dropped him off beside me. "I found him upstairs, wandering around in the sanctuary," He informed me, smiling. A few minutes later Toby was returned from upstairs again by another informant. I snuck in another conversation before a friend questioned me, "Do you want Toby heading up the stairs, because he's half-way up?" I decided that that was a good time to strap Toby to a high-chair.

I am reminded today that there is a reason God designed us to live in community, and I am thankful for that.

Saturday, October 23, 2010

Choosing Life in the Face of Fear

A friend sent me a link today to the organization Prenatal Partners for Life, which offers support to parents who receive an adverse prenatal diagnosis and encourages parents to choose life over termination of pregnancy. Looking through their website I was flooded again with the emotions that we had once felt after our twenty-week ultrasounds with Naomi, Emma, and Toby.

Each was a time of fear, a time of questioning, and a time to grow our faith. After we learned that our fourth child, a little boy, was missing a kidney, I feared that the one he had would be cystic as his sisters' were. I feared that his one kidney would fail after he was born. I feared for his life, but I had learned to trust the one who gives us these children. In the face of fear we named him "Tobiah" which means, "The Lord is good," and I wrote the following poem:

Heaven's Child

The blueprints are not flawed
Steady fingers have not failed
This is no accident
Sometimes grace comes veiled

It is not mine to prevent
Not mine to remedy
It is mine to accept
And simply bow my knee

This is masterful design
Not genetics going wild
Exactly as intended
This is Heaven’s child

Sent for more than my enjoyment
I can not hold him selfishly
His creator has a purpose
Higher than my plans for me

It is not mine to worry
Not mine to question why
It is mine to hold him
To gently hush his cry

It is mine to offer comfort
To love him without greed
It is mine to walk beside him
But let his Creator lead

Planned from long before creation
Written down, his Maker smiled
Exactly as intended
This is Heaven’s child

 

Tobiah Matthew Eby arrived with one healthy kidney and had no immediate complications. He struggled for his first year with inexplicably high potassium levels, but that has now resolved. He is full of life, energy, and a great desire to self-destruct that keeps me always on my toes. He is such a sweet and joyful little guy. We have been blessed, but now we're facing an MRI on Tuesday morning to find the cause of multiple lumps on his head. It is a good time for me to remember the words of faith I penned two years ago. May God bless all the families that face the fear of scary prenatal diagnoses and daily live the life of caring for Heaven's children.

Friday, October 22, 2010

Outpatient Field Day

Yesterday was our annual "Ultrasounds and Blood-draws Day." It's a necessary but evil time of year when we check up on Naomi, Emma, and Toby's kidneys and Hannah feels jealous. The morning started dark and early at 6:00am while I got ready, and lined up outfits, juice cups, and Ziploc baggies of cereal. Then Matt and I began pulling sleepy, cranky children from their beds and pacifying them with sippy cups of juice while stuffing their limp-noodle limbs into shirts and shoes. Amazingly, we were on the road by 7:15am, right on time.

The first pink streaks of sunlight were glowing on the horizon as we marched our troops into the Outpatient Imaging Center. The cold waiting room full of stoic elderly people warmed to a friendly, smiling simmer as the kids filed in, bubbling with excitement. As I got everyone registered, a receptionist offered Naomi a treat from their basket of goodies. Naomi confidently declined, "Those look like they all have gluten in them."

The ultrasounds went smoothly, to my surprise. Toby was a bit wary of the strange woman rubbing warm gel on his belly, but was content to listen to Matt and I sing round after round of his favorite songs. Then Matt took him to run the halls as Emma and Naomi took their turns. The sonographer immediately noticed a large mass on the bottom of Naomi's left kidney, but I calmly pulled out Naomi's MRI report from last November that showed the mass was indeed an extra lobe of kidney and not a tumor. "Wow, I'm glad you brought that with you, 'cause it sure looks like a mass!" the sonographer remarked. "I've learned to come prepared." I said.

Emma and Naomi also handled their blood-draws like old pros, probably because they are pros at this point. Collecting urine specimens from them both was a sticky situation, but we came out of that OK too. It would have been a gold star morning if we'd been able to leave then, but we had to wait for the radiologist to review the pictures and decide if he needed any more, and after two and a half hours of radiologic, phlebemotic, and urologic fun, the kids had had enough. Suddenly everyone was simultaneously hungry and hyper. They bounced about the room and up and down the hallway leaving a crumb trail that Hansel would have envied. I played the role of the birds frantically trying to pick up the crumbs and secretly hoping the children wouldn't be able to find their way back.

When the radiologist finally did come to discuss the pictures with us it was hard to give him due attention while making "I'm warning you!" eyes at Naomi, who was bouncing around the room like a doped-up bunny and threatening to crash into the ultrasound equipment. Fortunately the radiologist said he didn't see much change in the ultrasounds from last year, at least on the initial read. This is good news for my children's health and mine because, thankfully, we shouldn't have to repeat this morning again for another year. We'll take the day on November 8th to drive the crew three hours round-trip to see their nephrologist. Hopefully he will say that things are holding fairly steady, and perhaps the kids can go an enitire year without another ultrasound or blood draw. But that might be hoping too much.

Wednesday, October 20, 2010

Hard to Fill Those...

"Mo-mmy, ih ih my ah puh-uh! (Mommy, this is my last pull-up!)" Emma remarked in disbelief, pulling the last pull-up from her stash in the living room this morning. Being a generally organized person, I usually stock the pile again before it runs out. Emma held the orphan pull-up out to me with wide eyes. "Hmm," I said, nearly rolling my eyes in sarcasm, "I guess you have no more pull-ups." I opened my eyes wide to stare back into her shocked eyes, "You better keep this one clean!"

Never did I imagine that this little speech would have the least effect on her potty habits. Probably because none of the previous, and much more convincing, speeches have had any effect--nor the rewards, nor the consequences, nor the praise, nor the scolding. But my faithless heart felt the spring sunshine of belief glow as Emma proceeded to use the potty, completely of her own accord, seven times before noon--at a playdate's house none-the-less. I had tried underwear before in several-week spurts (and ended up too frazzled to attempt to pull another poop-filled pair of underpants down chubby toddler legs again), but never before had we run out of pull-ups. Apparently soiling the last of her security pants was a more motivating thought than the worry of soiling underwear that her mommy would have to wash.

Unfortunately, the magic wore off in the early afternoon and she ended up peeing a little in the pull-up on her way to the potty. "Oh no, Emma!" I sighed, then leaned my face in close to hers and whispered dramatically, "Now what are you going to wear?" She thought a moment and said, "Um...un-weah?" "Oh, but do you think you can keep underwear clean?" I replied, biting my lip in worry. "Yeah. 'an I weah Naomi oh un-weah? (Yeah, can I wear Naomi's old underwear?)" she asked hopefully. Naomi has recently graduated to a larger sized underpants and Emma has had her eye on the abandoned stack of Naomi's underwear ever since. I decided to seize the opportunity and hope for the best. "OK, honey, but we can't poop on Naomi's underwear!" I reminded her. She solemnly nodded her head, "Oh-gay Mo-mmy."

There were no further accidents today and Emma was reluctant to give up her new hot-pink briefs for a "night-time pull-up" (fortunately these look different than her day-time ones or I would have completely blown my cover). I reassured her that we would put more Naomi-wear on again tomorrow, but I don't want to get my hopes up too much. After all, those are some pretty big underwear to fill.

Delinquent and Sneaky

Naomi roused me from my sleep at 6:30 this morning tapping my shoulder and whispering, "Mommy, the tooth fairy didn't come!" Umm....ooops. "Well, it's not 7:00 yet," I countered, playing on a family rule against rising before 7:00am, "Maybe she's had a busy night. She's probably working into the early morning tonight." Naomi was satisfied with this explanation and slipped quietly back to her bed to await her reward.

Naomi had hopped off the school bus yesterday missing a seventh tooth and proudly displaying a gaping, three-tooth-sized hole in the front of her mouth. We oohed and aahed and listened to the whole story about how she had twisted it out at lunch and caught the attention of multiple tables around her. We looked at the little pearl in the plastic yellow "treasure box" they'd given her. I told myself not to forget my tooth fairy duties this time, but as usual, I forgot. Now I lay quietly in bed trying to figure out how to slip some quarters under her pillow in the next 25 minutes without her catching me.

I snuck upstairs and put two quarters in a Ziploc bag with a note for Naomi from the tooth fairy, then tiptoed back down the stairs. I decided to climb on top of the old television set in the corner, reach around the blanket hanging from the ceiling that separates our "living room" from the kids' "bed room," and gently place the bag beside Naomi's top-bunk pillow. The plan may have worked except that the quarters kept tinkling and the night-light in the corner caused my shadow to show on the wall beside Naomi. Before I could put the bag down, she stirred and sat up. I ducked quickly, climbed back down from the TV, and tried to cover the night light with a blanket. I thought I was pretty quiet, but something woke Toby and he began screaming. I had to abandon the current operation to soothe him. He clung to me and cried for a minute, then asked for more milk.

Upstairs I went for more milk, then gently rubbed Toby's forehead as he settled again. "Mommy!" Naomi whispered loudly, "The tooth fairy still hasn't come!" "Well, if she's anything like Santa Claus," I warned her, becoming a little annoyed "she won't come at all unless you go back to sleep." Then I realized my opportunity. "Would you like me to tuck you in again?" I asked with a suddenly sweet tone. Ha, ha, that's too easy.

I climbed up beside Naomi's bed and gave her a hug, slipping one arm under her pillow and dropping off the goods. "Good-night, Sweetie" I said, "I'm sure she'll be here soon." Quite pleased with myself I dropped back in bed at 6:50am, planning on at least 30 more minutes of sleep. Ten minutes later Naomi saw the 7 on the clock and scurried out of bed, waking Toby again. "Mommy, she came!" Naomi announced. I laughed in disbelief with Naomi, "Oh, that tooth fairy is so sneaky!"

Tuesday, October 19, 2010

Defender of Sanitation and Sanity

The brisk fall days have called my children out to the backyard to play...and in again to go potty, and back out again to frolic in the autumn breeze...and in to grab a sippy cup, and back out for a little romp in the sandbox...before coming in for a boo-boo kiss, and heading back out again. So despite the proliferation of hardy, frost-defying bees and houseflies, I've settled on simply leaving the patio door open in the afternoons. Well, that and the fact that Toby ripped a toddler-sized exit in the screen door. Anyway, a few flies have taken up residence in our home.

Today, after returning from another impromptu doctor's visit (hey, he had a rash on his head), I whipped up a lunch of gluten-free ham, egg, and cheese bagels with fruit salad and called my dear family to the table. After smoothing hair and snapping bibs we were all ready to sing and pray, except for my husband, who was stalking flies. We carried on as he tracked a fly across the kitchen, swatter cocked behind his head, then blindsided the innocent fellow just as he landed on the chandelier over the table. The writhing, squirming fly landed dangerously close to my cuisine. "Matt, could you..." I started. "Hannah," Matt countered, turning his attention to one of our daughters with a wink, "Daddy's protecting you from these germy flies. See, first they land on poop and then they land on our food. It's important."

He continued tracking and swatting flies, downing and disposing of twelve in all. With an air of satisfaction he swaggered to the table and sat down to eat as the rest of us were finishing up. "Toby," he sighed, "when you get big Daddy will teach you how to hunt flies, like a man." Toby can't wait to begin, in fact tomorrow he's planning on completely dismembering the screen door, just for that purpose.

Monday, October 18, 2010

MRI: More Restlessness Inflicted

So I called the pediatrician's office this morning, then waited for the nurse to call me back. I then had to relay to her my questions for Dr. A. "So what exactly is causing the lumps on my toddler's head? Is there something scary that we just couldn't see on an x-ray?" I waited a couple hours again for her to call me back. When the nurse called she said Dr. A had talked to the radiologist who interpreted Toby's x-ray. Somehow they arrived at the conclusion that Toby should have a follow-up MRI on his head. I don't know if this is because they really suspect something scary, or if they're being extra careful, or if they're just trying to satisfy me to get me off their case.

The appointment is set for next Tuesday morning. I am glad that Toby will have the MRI. I think it is what I need to set my mind at ease. I need to hear someone tell me exactly what's inside those bumps and that it's not going to hurt him. At least that's what I think they will say...what I hope they will say. I just need to stay away from the Internet research and keep myself busy until then--not usually a problem with my line-up of responsibilities.

For the next week my days will go something like this: laundry, breakfast, "Is that a bump on his spine now?" dishwasher, laundry, shower, look at spine again, bake gf bread, laundry, stop self from looking up "bump on spine" on Internet, opt to write in blog instead, help Hannah with workbook, read book to Emma, laundry, dinner, bedtime, and a little laundry. Only a slight deviation from normal, but I'll rest easier once we get clear results next Wednesday or Thursday.

MRI:

My Reasoning Incited?
More Restlessness Inflicted
May Relieve Irrational fears

Saturday, October 16, 2010

The Night Life

I went to bed before 10:30 last night, which is pretty early for me. I was really looking forward to a full night of sleep. Ha, silly me.

At 11:40pm Toby woke up screaming. Matt wasn't asleep yet, so he tended to him and realized he needed a diaper change. Somehow Toby must have peed a little while his diaper was off (he hasn' t done this for months) and Matt had to wake me to help him change Toby's jammies. I ran upstairs to refill Toby's soy milk, used the bathroom while I was up, then soothed Toby back to sleep. Ahhhhhh.

Almost immediately Naomi started coughing. She hasn't had trouble with coughing at night since last winter, but last night it was back. One coughing fit after another ensued, with maybe a minute's break in between. I laid in bed, groggy, sure she would stop soon. Finally, around 12:30am, I roused myself, went upstairs, and dosed out some Robitussin DM. She took it happily, but the coughing didn't stop. Around 1:00am I drug myself out of bed again and set up a nebulizer for her. Matt attended her with the nebulizer and I dropped back in bed. At 1:20am I heard the nebulizer stop and Matt tucked Naomi back in bed, propped up on some pillows. The coughing continued, but taperd off around 2:00am and we finally fell asleep. (She's fine today.)

At 4:40am I woke to hear someone standing beside the bed, breathing softly. I reached out into the dark and found a cold, naked Emma. "Emma, what are you doing?" I croaked, half asleep. "I weh pee in pah-ee. I nee el wih my gammie (I went pee in potty, I need help with my jammies)" she answered. I congratulated her, threaded her arms through the arm holes, zipped her up and sent her back to her bed. Ahhhhhh.

At 4:50am Emma began crying loudly. I jumped out of bed and rushed to hush her before she woke anyone else. "I nee my ah-er ah! (I need my other sock)" she whimpered. I couldn't find her other sock so I grabbed a new pair, threw one on the floor, stuck the other one on her bare foot, thumped her back down in her bed, and told her she needed go to sleep this time. Since I was up I traipsed upstairs again to use the bathroom.

At 6:30am Toby woke screaming again. I'm not really sure why, since 7:30am is his normal time to wake up. I jumped up quickly to hush him before he woke anyone else. His cup was empty again so I ran upstairs and refilled the cup with more soy milk, then rushed back down to hush him again. Miraculously, he settled down again and I was able to snag nearly another hour of rest before the whole crew was up.

So I slept from 10:30-11:40pm, 2:00-4:40am, 5:00-6:30am, and 6:45-7:30am. That's around six hours of sleep total--sort of, with five trips upstairs in the middle. Ah, the night life, I think I may prefer newborns' sleep hapbits to toddlers'.

Lumpy Head Picture Gallery

So to go with my post last night I followed Toby around with a camera this morning and tried to take some pictures of the bumps on his head. There are three inherent problems with this: 1) Toby is a moving target. 2) There is still some hair on his head. 3) Everytime the flash went off it seemed to wash out the bumps in the picture to just a shiny white spot. So, you can't really understand them unless you feel them. But here are some pictures anyway.

Bump over right ear
Bump over left ear

Bumps on lower left side of head
More bumps on left
Left again
And you can see at least one behind
the ear on the right

For comparison here are a couple pictures from his first haircut in March:
No sign of bumps there
or on the right

So now you can see the strange new bumps I'm talking about--not that that gets us any futher with knowing what they are, but at least you understand me better.

Friday, October 15, 2010

More Fear, More Relief (I think)

I swear, I really don't want to be traipsing off to doctors constantly. I don't want to be a hypochondriac. So about a month ago when Matt mentioned that the back of Toby's head seemed awfully lump, I laughed and said, "This is Toby, do you know how many times he's hit his head? Of course it's lumpy."

Then on Wednesday evening I gave Toby a long-overdue haircut. I couldn't believe all the bumps I found under that mop of hair--seven! And it was hard to get the hair clippers over and around them. Ranging from 1-2 cms in diameter they appeared over both ears, three more on the lower back left of his head, and two more on the lower back right. At least a couple of the bumps were too prominent to pass off without a worry, especially since I was sure they weren't there (or at least not that prominent) at his last haircut three months ago. I took Toby in to see our friend, Dr. A. the next morning. She greeted each of my children by name in the hallway as she was going in to see another patient. We're old friends by now.

Dr. A smiled broadly at the kids when she entered our room, but her smile quickly faded when she took a look at Toby's head. She quickly checked all the lymph nodes in Toby's body--none swollen. Of course she had trouble pinning him down for this examination. She ended up following him as he climbed onto the arm of a chair and into the windowsill. She examined him right there, standing in the windowsill of an open window, looking out into the parking lot. She said it was the first time she'd done an exam in a windowsill. "Well, the bumps are sure prominent!" she remarked, but observed that they didn't seem to be painful or tender, and that he didn't seem to act ill at all.

"I'm going to order a plain x-ray," she said. When I asked her what she was looking for she drew a breath and said, "Well, we're praying that it shows soft tissue...that Toby's head is just bumpy because he's Toby, and he's active, and maybe he's hit his head a lot." "What else could the x-ray show?" I pressed. I know this annoys doctors, but I needed more information at that point. She listed some options: bone cysts, other cysts, fibrous growths. She never used the word tumor, but when I asked if "something" growing inside the skull could cause it to push out like that she replied matter-of-factly, "It could." She encouraged me to take Toby to the hospital for the x-ray that afternoon so we could have the results before the weekend.

I worried, of course, all the way home. I told Matt, we looked at the Internet (bad, bad, bad!), I called my parents, but I resisted the temptation to sound the alarm. After lunch I left the girls with Matt and drove Toby to the hospital. I told the technicians to be prepared for the fight of their life trying to pin Toby to a table and x-ray his skull. It was his normal nap-time and he was visibly sleepy, so I pointed to the table and told him he was going to go "nigh-night" there. I called the foam cushions around his head his pillow and the lead apron over his body a blanket, and he willingly laid down! To my amazement he nervously looked at the lady squeezing his head with the two foam cushions and the other lady dangling a foam penguin in front of him, then he looked back to me in my lead apron and squeezed his blankie tighter, but he didn't fight. They were able to get good pictures quickly, and then we just had to wait.

There's nothing like waiting around when your pediatrician has just shown worry about the bumps on your toddler's head. Fortunately, there was no shortage of things to keep me busy. I did revert back to Internet research last night after the kids were in bed. I knew I was only signing myself up for more worry, but I'm like a moth to a flame. After an hour or so of looking at articles on cysts, fibrous growths, tumors, and other scary things I decided to give up and go to bed.

I waited anxiously for the phone to ring this morning and tried to keep myself busy with laundry, dishes, meal-planning, and shuttling Emma to and from preschool. Just before noon I called the doctor's office, but they hadn't received the radiologist's report yet. Finally, at 2:00pm I decided to take Hannah and Emma for a field trip to see that piano that plays all by itself at the hospital. Matt was home to stay with Toby while he napped. The girls enjoyed the piano, and I just happened to stop by the imaging department and pick up a copy of the report myself, you know, since we were already there.

I thanked the receptionist and nonchalantly slipped the paper under my arm as I led the girls back to the hallway, but as soon as I was alone in the hall I looked down at the report. "The skull has a normal appearance. No abnormal mass is identified."  Phheeewww! I felt like skipping out of the hospital with my girls.

But the question remains: why is his head so lumpy? I look at pictures I had taken of his head back in March after his first haircut and I don't see any lumps...maybe a little bit, but nothing like what's there now. And I'm sure they weren't there at his last haircut about 3 months ago either. What could cause lumps to grow on my child's head that wouldn't show anything on an x-ray? Dr. A had acted like if the x-ray didn't show anything then we would just say, "OK, that's Toby, no problem." But I still want to ask her if there's anything else bad that it could be that just wouldn't show on an x-ray but might on an MRI or CAT scan. She never called me today, and now it's the weekend. I guess I'll have to harass her on Monday.

So if any of you have any insight, let me know. I'm pretty much relieved, but not completely until I hear the doctor tell me that I should be. It may be a long weekend.

Wednesday, October 13, 2010

A Day in the Life...10/13/10

I thought I'd jot down most of today's events, just for fun. Here's a typical, "uneventful" day in my life:

3:54am Toby wakes up screaming. His diaper has leaked, soaking his pajamas, sheets, and blankie. I sleepily change his diaper and jammies, but leave the sheets and blankie for morning--good enough, back to sleep.

7:18am Hannah wakes me, tapping me on the back, "I can't find my doggie pillow." I refuse to show sympathy.

7:24am Hannah takes matters into her own hands and brings a flashlight downstairs. I fly out of bed from fear that she will wake Toby, quickly douse the light, fish the doggie from under the covers, and escort Hannah upstairs, Emma follows.

7:33am Emma "helps" me get the juice from the fridge, but trips, drops the 64 oz juice bottle on the floor and hurts her toe. Thankfully the juice bottle remains intact.

7:40am Hannah heads to dress herself and Emma begins the long, arduous process of taking off her PJ's and dressing herself: "come out arm!" Which side of that pull-up goes in the front anyway? Get over my head you shirt! Oops, backwards. "I nee el ah-eee my ean! (I need help snapping my jeans!)"

7:54am I find a belt for Hannah that Naomi had once used when she was two. It's too big for Hannah's tiny little four-year old waist, but she wears it anyway.

7:58am Naomi appears as I'm placing a teal cupcake in Hannah's hair. She begins getting ready for school.

8:16am Hannah asks for a favorite cereal, Honey Bunches of Oats, and I have to remind her that it has gluten in it. I suggest Honey Nut Chex instead. "Do you have any Honey Nut Chex of Oats?" she asks, hopefully.

8:17am Toby cries. Downstairs he is still clinging to his pee-soaked blankie. He greets me with, "Want juice!" He is rewarded with a cup of juice, but will not relinquish the blankie.

8:22am I fix Naomi's hair and wipe her glasses clean. Hannah laughs, "Mommy, you put the wrong lid on Emma's cup. I look to see that I had indeed mixed two brands of sippy cups, oops.

8:25am Toby laughs as I struggle to pull a too-small shirt over his head. I note that I really need to get out Toby's larger clothes for the fall today.

8:30am I pull Naomi's lunch from the fridge and put it in her backpack. I fill her water bottle too while she munches some gluten-free frosted-flakes.

8:35am Naomi and I head out to the bus stop while Toby screams. He knows he's missing that big yellow bus, but Daddy holds him back.

8:39am I return to find Toby raiding the Cinnamon Chex on the kitchen table. Hannah announces, "I can't wait to go to kindergarten, Mommy."

8:47am I see Toby's blankie left alone and snatch it quickly away and downstairs to the washing machine along with his PJ's and sheets. I come back up with an armload of abandoned sippy cups bound for the dishwasher.

9:00am I drop an overdue thank-you note in the mailbox.

9:15am While Hannah and Emma save Princess Dora from various precarious scenarios and Toby empties out every toy in the toy bins, I alert Matt that he's on kid duty as I take a shower.

9:20am Toby has found me out and bangs on the bathroom door, "Mom-my! Mom-my! Mom-my!"

9:40am I rush downstairs, with Toby on my heels, to slip Toby's blanket into the dryer, and close the dryer door just as he shows up. "Nothing of interest in there, Toby, nothing at all."

9:42am Hannah places a pre-k workbook on a stool beside me and I help her learn beginning sounds of words while I spray the stains on shirt after shirt with "Shout". I take a short detour upstairs to wash some surprise poop out of a skirt.

9:45am I'm ambushed by Toby who has found himself a cereal bar and is demanding that I open it for him, "'nack, 'nack! (Snack)." I head downstairs and start that second load of wash, then escort Toby back upstairs and remind him to keep his snack in the kitchen.

10:15am I call my mom for a BBQ pork recipe and gain a ham-ball recipe as well. She also tells me that the miners are being pulled from the Chilean mine right now.

10:30am I attempt to find coverage of the miners' rescue on TV, but (as we don't have cable) I find only extreme sludge covering the break-up of some celebrity couple. I also discover that Emma has failed to use the potty and her pants have suffered.

10:40am I put the BBQ pork in the crock-pot and look up video of the miners' rescue online instead. Hannah,  (pants-less) Emma, and I all cry happy tears together as we watch clips of rescue after rescue. We love a happy news story, but Toby doesn't, and climbs on my lap, screaming for my attention.

11:20am I confine Toby to his high-chair so I can fix some lunch. He is appeased by a banana, and I fix some fruit salad and personal pizzas on gluten-free English muffins for lunch.

12:05pm We sit down together for lunch and Hannah announces, "I love my mommy sooo much because she makes these good foods for me...and she took me to a surgery!" I can always count on her to boost my self-esteem.

12:20pm I realize that Toby has been confined for a full hour now and he's fussing for a good reason. I attempt to wipe the pizza sauce out of his hair and release him.

12:40pm I put Toby down for a nap with his freshly clean sheets and blankie.

12:45pm I switch the laundry again and start a third load.

1:00pm I take a Vanilla Coke break to check my Facebook account.

1:35pm The pediatric GI doctor's office calls and tells me that Hannah's biopsy does confirm a diagnosis of Celiac disease.

1:55pm Hannah renews her interest in her workbook and I help her sound out middle and ending sounds as I load the dishwasher with yesterday's dishes.

2:10pm Hannah puts together the sounds of three letters she recognizes: d, o, and g. A light comes into her eyes and she says, "du-aw-gu...dog!" She tries the next word, "pu-ih-gu...pig!" "I'm reading!" she says with excitement, "I'm reading!" It is such a great moment I have to get my camera and record it.

2:40pm I begin baking a batch of gluten-free bread while Hannah and Emma watch with curiosity. Hannah remarks, "Learning is hard, I don't think that's what school would be like. School is fun."

3:30pm I set the bread on the oven to rise, and clean up the mess I had made while measuring and mixing.

3:40pm I realize that I need to run and get Naomi from the bus stop and that Emma's still not wearing pants. I call to Hannah to put her shoes on, zip Emma up in some pajamas, slap sandals on her, and dash to the bus stop in the drizzle. We arrive just as the bus is pulling up.

3:48pm We come home and hear that Toby's fussing in his crib. I retrieve him and change his diaper.

3:52pm I pull apart the pork in the crock-pot and pour the rest of the BBQ sauce over it.

3:55pm I spend five minutes searching for Emma's sippy cup and find it in a back-pack. I dole out Nesquick and milk, fruit snacks, and gluten-free grahams for snack.

4:03pm Emma wants help opening her yogurt, the timer beeps signaling the end of the bread rising cycle, and the phone rings.  Aaggghhh!

4:08pm Two loaves of bread in oven, and I open the yogurt for Emma.

4:10pm I clean out Naomi's lunch box and pack a lunch for her for tomorrow.

4:40pm I lead Hannah and Emma in a toy clean-up campaign while Naomi does her homework.

4:58pm Pull bread from the oven.

5:05pm Change Toby's diaper again.

5:15pm I set the table and slice into the wonderfully yummy smelling bread, only to discover that both loaves are at least half-empty inside, with dense, unrisen bread collapsed on the bottom and an enormous air pocket on top. What the heck?

5:42pm We sit down to dinner and enjoy BBQ pork sandwiches with baked beans and corn. All enjoy it despite the unconventional bread.

6:05pm Matt and I clean-up from dinner. I propose a video reward if all the girls can manage to get their PJ's on and brush their teeth. Hannah helps Emma with her PJ's and Naomi passes out the toothbrushes.

6:25pm We bathe Toby to rid his hair of pizza sauce and give him a much needed haircut while everyone enjoys a Berenstein Bears video.

7:00pm We bathe Toby again to rid him of hair clippings.

7:20pm I put Toby to bed with a cup of soy milk, while Matt sings a Psalm and prays with the girls.

8:05pm All kids are in bed, but quite chatty down there.

8:45pm Kids are quiet now, but Naomi comes up to tell me that her ankles are hurting again. I give her some Tylenol and send her back to bed.

9:00pm Matt and I settle down to watch part three of PBS's "God in America." (I multi-task and work on my blog while watching it).

Very soon, time for bed. Even uneventful days are tiring, and I just realized that I never did get out Toby's new fall wardrobe. Maybe tomorrow...

Tuesday, October 12, 2010

Marriage Material

Hannah appeared in the kitchen as I was washing up some pans. She grinned and spread her arms wide in "ta-da!" fashion. I looked to see that she was arrayed in dress-up clothes with hair-ties as bracelets and rings, and with multiple superfluous hair clippies adorning her hair. "I'm all ready to get married!" she announced. I laughed and gave her a wink, "Some day you may have a real wedding."

"Who will I marry, Mama?" she asked. "Hannah," I answered, "you can marry anyone you want to as long as he loves God with all his heart." "Well..." Hannah replied, "I think he needs to speak the same language as me 'cause he won't understand what I'm saying." "OK, that is another consideration," I admitted.

Hannah wrote her name on a post-it note and stuck it to her tummy. "There," she said with a satisfied nod, "Now he'll know my name when I meet him." (As long as he reads English that is.)

Monday, October 11, 2010

Extension 35

As Matt was glancing through some papers on the end table this morning, his eyes landed on a business card that Emma's speech service coordinator had left. The coordinator had scrawled her phone extension on the card "X 35". The card happened to be laying upside down, and as Matt's eyes fell on it, he smiled and said, "Oh, is this a note for me?" I strained to see the card, wondering what in the world he was talking about, then laughed, "Very funny, men see what they want to see."

"What? What are you laughing about?" Hannah called from the kitchen. "Umm, you have to know how to read to understand it, Hannah." I tried to explain. "What? Just read it to me? I'll understand it." She insisted. "OK," I said, "It says...extension thirty-five." Hannah and Emma erupted into giggles. I guess it's funny either way you look at it.

Taming the Table Tyrant

Last night we resumed our typical dinner routine, with Matt, the girls, and me at the table trying our best to enjoy dinner while Toby screamed, writhed, wriggled, pushed, panted, and squawked, attempting to break free from his high chair. He had devoured his fruit, and now that nothing else on his tray looked appealing, he was determined to move on to more exciting ventures. Matt and I were equally determined that it was time he learn to sit for longer than three minutes at a meal. And so he squalled, and we did our best to ignore him.


Mom, I've got better things to do with my time

"Why don't you just put him in his crying cage?" Hannah suggested, looking with disgust at her unrefined brother as she dipped a bite of cantaloupe in her barbeque sauce. "His crying cage? Do you mean his crib?" I asked. "Yeah," Naomi piped up, forgetting not to talk with her mouth full, "I'd shay that'sh a good plashe for him." Emma, not to be left out of the conversation, contributed, "Yeah, I ay ah a guah pay oh im!"


"Toby," I said sternly, to gain his attention, "do you want to go to your crying cage?" He froze, half-twisted around in his high chair, and thought a minute. Then he answered in a pitiful, solemn tone, "Bush-a gu gush-a go ga do-wee." "What did he just say?" I asked Matt. Hannah answered instead, "He said, 'Bush-a gu gush-a go ga do-wee.'" All three girls erupted in giggles. Toby, sensing that he had had something to do with this joke, giggled too, happy at least that something of note was happening. But it wasn't long before the spell broke, and Toby resumed his stuggle for freedom.

Lunch today was far worse, with Toby reverting to food-flinging, something we thought we had tamed months ago. I'm debating whether he would be happier, and perhaps rise to the occasion of table-worthy manners, if we actually put him at the table in a booster seat. Or, the weather is nice again today...maybe a peaceful dinner in the park again? Of course, winter is coming, that's only a temporary fix. Somehow I'm going to have to tame the dinner-time tyrant, I'm just not sure whether I should use consistent, firm, loving discipline until I'm half-dead or just go for the duct-tape.

Sunday, October 10, 2010

Picnic in the Park

My girls have been asking all summer to have a picnic in a park. Though I am generally optimistic and I do love nature, the idea of attempting to serve four small children a meal in the outdoors--fighting wind, sun, and bugs--was less than appealing to me. When the weather turned unseasonably warm yesterday I mustered my ambition and decided to give my kids the experience they deserve--I do want Hannah to have more happy memories than going to the hospital.

I made gluten-free sandwiches for lunch, but just as I was about to pack them in the cooler Naomi's attitude took a nose dive, and the picnic plans had to be postponed 'till dinner. By the time discipline was dealt with I had neither time nor energy to make a different lunch. The sandwiches were served for lunch, and dinner had already been put in the crockpot. "Well," I thought, "Crock-pot ham and pineapples for a picnic--this should be interesting." I briefly pictured staking Toby's shorts to the ground in order to keep him from running off into the woods while I wiped pineapple juice from the chins and shirts of three girls.

To my amazement the picnic was a grand success. We were able to walk to a local county park, just behind our subdivision (OK, "hopping" the fence with a double stroller was interesting), and the weather was absolutely perfect--no wind, perfect temperature, slight shade. And to top off the amazement sundae, all four children sat completely still and ate every bite of dinner I had packed, with minimal mess and only a few mosquito bites. Hannah didn't waste time in thanking me, "Oh, I love it out here, Mommy! Oh, it's so pretty! I just want to look and look at the trees while I eat! Oh, thank you, Mommy!" Toby, too, was content to sit still, eat quietly, and fill his eyes with the scenery." I think this is the most pleasant dinner we've had in months," Matt said. And then I woke up--no just kidding, hard as it is to believe, it was real--and I had to agree with Matt.


We actually had picnicked in a secluded spot of a Frisbee golf course, so after packing up dinner, we followed the Frisbee golf trail for a family nature hike. Naomi became entranced with following the signs to find each hole. She took off running and giggling with her new boundless energy, and was so excited she nearly jogged in place every time we asked her to wait up. Hannah and Emma laughed and trailed after her. Toby threw his arms up in the air, squealed and ran 'till his little feet could run no more. He did attempt to take one short-cut through a thorny thicket and was extremely put-out with me when I thwarted him, but after a minute of screaming, flailing, and back-arching fury, he forgot the fight and joined his sisters again in the pursuit of hole #15. The whole night was such a success it may even have topped Hannah's hospital visit, but I haven't had the courage to ask her yet.

Though they hated to leave the park, I think four tired-out, wound-up kids were ultimately happy to have a warm bath, some cream on the mosquito bites, and a soft bed. No one woke me in the middle of the night last night. Why didn't I take them on more picnics this summer?

Friday, October 8, 2010

Is this Heaven? Nope, it's the Hospital

When you hear a child sweetly, wistfully, whisper to her mother, "Thank you, Mommy. Oh, thank you. I love you so much, Mommy, because you take me to places like these." You might think that mother had just taken her child to Disney World, or a birthday party, or a least a large park that looked like a castle. But if you had been in our van today as Hannah whispered these sweet words to me with all the emotion of a sappy love story, and had thought those things, you would have been wrong. We were returning from a children's hospital where Hannah had apparently undergone the biopsy of her dreams.

Hannah has an amazing, unbroken optimism about her. She revels in new places, new experiences, and new people. All of which she hasn't gotten enough of lately, I guess. She soaked in the beautiful scenery on our three hour drive down yesterday. "Oh!" she exclaimed as we topped a hill, "Look, Mommy, look at the pretty colors on the trees! Oh, it's fall, it's fall!" as if she wasn't every bit as excited about winter, spring, and summer. "Oh, look at that old, falling apart barn, Mommy! Why is it all broken like that?" I began to answer, but soon realized she much preferred to speak than to listen to my answer. "Look, two cement mixers beside us, Mommy! Oh, look, Mommy, a big hill, a really big hill! Why is that hill so big, Mommy? Hey, the sun is setting! Oh, look at the pretty pink clouds!"

She also busied herself creating a doodle-pro depiction of herself on an operating table, with a doctor running a tube down her throat and me standing beside her, smiling. That's a picture of her insides on the wall beside my stick-figure on the left, a box of Kleenexes on the table in front of me, and a cast removal machine in the lower right-hand corner. I guess you never know when you might need a cast removed.

Hannah, was thrilled with the sleeping accommodations at our hosts' house, for no particular reason, except that it was something new. I slept a bit better than last time around, but still restlessly. We were up just after 6:00am and left in the dark. Hannah was, of course, enamored with the big city lights glowing in the dark sky as we entered the interstate. "Hey, there's a really big tall building over there, Mama! It looks like the Serious Tower in Chicago!"

Her chatty demeanor cooled to a simmer when we were finally checked in. Before long we were shown back to a room, and I was surprised to be greeted by the same nurse who had cared for Naomi. She looked at me a minute and said, "You're the mother of the reader, aren't you?" When I explained to her how excited Hannah was to be there, the nurse took extra care to make sure that Hannah received all the special treatment that Naomi had.

Though Hannah was suddenly tongue-tied, her eyes continued to glow. Everyone seemed delighted to have a child that was happy to be there, and they were determined not to let her down. Hannah was outfitted with a gown, a pink butterfly surgical hat, pink latex gloves, and a bottle of bubbles.

We played two rounds of Candy Land while we waited our turn. I won the first game--it's hard to let someone else win in a game of complete luck. So I challenged her to a second game. Watching her face fall, as I closed in on the Candy Castle again, I had to think quick. "Oops!" I said, bumping the pile of cards, "I better shuffle these again. Hey, look, Clifford's on TV." Then I did some fast rearranging of cards that just happened to send me back to the Candy-Cane guy and Hannah all the way up to Princess Lollipop in the same turn. She was delighted with her fortune, and the day was saved.

The nurse asked me if I thought Hannah would need any medicine to help relax her in order for them to take her back to the procedure room. I laughed and said, "No I think she'll do just fine walking back on her own." Are you kidding me? She's been looking forward to this for two weeks now. Wild horses couldn't drag her from it! And she did just fine, walking back, laying on the table, and breathing the sleepy air, no assistance needed.

The doctor briefed me about 40 minutes later, saying she couldn't see any obvious signs of Celiac with Hannah, but that is not uncommon in Celiac. It really takes a look under a microscope to make the diagnosis. Hannah was more subdued when they wheeled her bed back to my room. She was groggy and had a bit of a sore throat, but that was nothing that a little Sesame Street, some apple juice, and a grape Popsicle couldn't cure. She was also delighted to see a stuffed doggie-face pillow,
just like Naomi had received, at the foot of her bed. Hannah later told me, "I was so surprised to see that doggie pillow there, it surprised me right up into a sit!" She was actually disappointed that we were discharged before the Sesame Street episode was over. She received a royal ride to the exit, in red wagon with a bag full of her surprises tucked beside her. And then it was over, but I guess that was OK with her.

On the drive home Hannah was silent for awhile, which was a relief to me as I tried to navigate us out of the city. After a bit, she smiled at me, in between bites of Curious George fruit snacks, and said, "You know, Mommy, I knew it was going to be good, but it was even better than I thought!" This was followed by a Hannah thank-you chorus and a happy ride home. My only problem now is that Emma is jealous...

Tuesday, October 5, 2010

Lights...Actress...Biopsy!

Tomorrow is the day Hannah has been waiting for, praying for, dreaming of, and babbling incessantly about for one week. We get to pack our bags together, just Hannah and Mommy, then leave on a special Hannah-Mommy trip together after an early dinner. I will spend three hours in the van with her, a completely captive audience, listening to her every senseless fancy--a dream come true for Hannah, whose Mommy usually doesn't indulge her quite so much. We will spend the night at a friends house, and leave early Thursday morning for the children's hospital, where I pray they will shower her with all the attention and prizes that Naomi received two weeks ago, or it will be more disappointing for her than opening underwear on Christmas day. Well actually, if the underwear were really pretty Hannah would probably be thrilled. Anyway, I think she'll be fine undergoing the endoscopy. She likes new people, new things, and lots of attention. She gets to spend twenty-four hours with Mommy, breathe in bubble-gum flavored "sleepy air," wake up to drink apple juice, and come home with a load of prizes. She can't wait.

At dinner Matt announced, "I can't wait because tomorrow I get to leave on a special trip with Mommy and have a biopsy!" A brief silence followed. "No..." Emma smiled, "Ah-nah go wi Mo-mmy!" "Yeah, Daddy," Hannah said saucily, "It's called a children's hospital and I'm a child, not you!"

At bedtime Hannah was too excited to sleep. "I'm going to miss you while you're gone," Matt told her. "I want to miss you Daddy," Hannah replied, "but I can't. I'm gonna have to much fun." Oh dear, nothing like setting yourself up for a let down. Let us hope it's all she dreams it will be.

"Gu-day!"

This morning the GI doctor's office called once again while I was in the shower. "I'm sorry, Mrs. Eby," the doctor said, "I hope I didn't wake you up." "Oh, no, don't worry about it. I was already up," I said, but I thought, "Don't worry, no matter what time of day you call, your certain to catch me in the shower." Do you have any idea how tricky it is to receive your daughter's biopsy results that you've been waiting two weeks for, while attempting to pull a shirt over your head and find a piece of paper and a pen to write with? Well, it's tricky, but I pulled it off (or on), because I excel at multi-tasking. Only, by the time I got the paper and pen the doctor was finished speaking and I was left to recall what she said from my memory anyway.

Here's what my fabulous memory recalls. Naomi's biopsy results confirm the diagnosis of Celiac Disease. The villi--little finger-like projections covering the surface of the intestine that help to digest foods and absorb nutrients--were completely flattened. This is characteristic of full-blown Celiac Disease and means that the intestine is unable to absorb many key nutrients. "There's nothing subtle about her diagnosis," the doctor remarked. The villi will heal and begin functioning normally after six to eight weeks with no gluten in the diet. We've completed almost two weeks now. Once her intestines have healed and she begins to absorb nutrients properly we should only see more improvement in her health.

Toby watched my every on-the-phone move from his high-chair. I released him and called my mom to tell her the results as I cleaned up after breakfast. He stalked me as I swept the beach of cereal crumbs from under the table, and as I washed the residual gluten from my hands. When I finally sat down, still chatting with my mom, he pounced on my lap and began wrestling me for the phone. Grandma was happy to oblige him, but he was reluctant to give up the hard-won prize when the conversation ended.

After dinner this evening Matt took all four kids to the backyard for a crisp-weather round of tag. Toby couldn't get enough of the running, tackling, swinging, and laughing. When I finally subdued him with his blankie and a sippy-cup of milk, Matt gave him a good-night kiss and said, "We had a good day today, Toby, didn't we?" Toby's sleepy eyes snapped back to life. "Gu-day!" he said, pointing to the patio door. "Yes," Matt laughed, "And we can have a good day tomorrow." "Gu-day ma-ma-woh!" Toby grinned.

I tucked him in bed, gave him a little kiss, and began to walk away. Toby stood back up in his crib and called out to me, "A pone! A pone!" I walked back, unsure of his request. "What, Toby?" I asked. "A pone!" he said, his eyes shining with hope. Then, seeing that I didn't understand, he placed his hand beside his cheek, diagonally between his mouth and ear and said, "We-woh! A di-ji-dawah-mawee!" I laughed, put my hand to my cheek and pretended to talk back to him. He felt fulfilled by whatever we said to each other, and after laughing at the joke he'd made, laid down happily and went to sleep. Sure he thinks phones are fun now, wait 'till he gets old enough to take showers.

Interpreter Needed

Usually I can make out what Emma is trying to say to me if I listen closely, watch her body language, and use context clues, but this morning she had Matt and I completely stumped. I bit my lower lip, raised my eyebrows sheepishly and admitted, "I'm sorry, Emma, I can't understand you. What did you say?"

She narrowed her eyes to glare at me, then repeated slowly, as if I was hearing impaired, "Ah I why ah a ah-ee ah ow aiw?!" I thought a moment. I was fairly sure that the "ah-ee" I had heard was "potty" so I ventured a guess, "you need to go potty?" "No!" she snapped back at me, then rolled her eyes. I looked helplessly to Matt. He shrugged his shoulders, "I have no idea...hey, Hannah," he called to Emma's pseudo-twin in the next room, "what did Emma just say?"

"Oh, she said 'Can I ride on a hoppy ball downstairs?'" Hannah replied nonchalantly. Dumbfounded, I turned to Emma, "Is that what you said?" "Yeah!" Emma grinned. I turned back to Hannah, "Hannah, how did you know that's what she was saying?" "I don't know," Hannah shrugged, "It just sounded like that." And off ran the Siamese twins, attached at the brain. Matt sighed, "Hannah is handy to have around sometimes."

Monday, October 4, 2010

Notes to Self: Smell the Shortening

Hypothetically speaking, you should be careful if it's been awhile since you've baked anything from scratch using shortening, because apparently shortening can go rancid after spending one year in your garage pantry. So if you have wonderful smelling chicken in the crock-pot and you're quickly mixing up some gluten-free biscuits, you might not notice that it smells like a dead rat and you might ruin your entire $5.00 box of Gluten-Free Bisquick. You might have to throw away the entire batch of delicious-looking, disgusting-smelling, nasty-tasting biscuits while your children remark, "These are the most disgusting biscuits you've ever made, Mom." You might also notice later that your toddler, who eats nothing you make except fruit, devoured his entire dead-rat-smelling biscuit before you removed it from his high-chair tray. Hypothetically speaking, of course.