Thursday, September 30, 2010

Wheat by Any Other Name

Matt and I went shopping one evening after the kids were tucked in bed. (This is a big benefit to living with the inlaws). We spent our date slowly making our way through the grocery aisles of Meijer, thoroughly reading the label of each item before it was added to our cart: Malt is not OK; Dextrin might not be OK, contact manufacturer to verify; but Maltodextrin is OK. I don't understand how it all works just yet. Once in awhile we hit the jackpot with the beautiful label "GLUTEN FREE" or simply "GF."

The amazing thing is the new way in which Celiac disease can make you view your old favorite foods. After ensuring that not one nanogram of gluten made it into our shopping cart, we were looking over the labels on some rice cakes when I glimpsed a label reading, "Mr. Wheat: Crispy snack wafers made with 99% whole grain wheat." Instantly I recoiled as if the label had read "made with 99% whole cyanide." Matt laughed too, "Might as well put one of those little green poison face stickers on that." Suddenly my mind saw Mr. Yuk just about everywhere: on the cereals, the bagels, the granola bars, the crackers, the breadsticks, and the frozen pizza I once loved. I had to make a break for the produce department before he stopped showing up on everything I saw. There was something especially refreshing about coming home to a pantry stocked with completely gluten-free items.

Matt and I had blood drawn today to test for antibodies to gluten so we're free to begin the gluten-free diet now. After Hannah's biopsy next week, we're purging the pantry of Mr. Yuk.

Light in the Silly-Act Disease

Today's crisp fall weather called me away from the dishes and laundry, away from the gluten-free recipe search, the job-hunt, and the doctors' phone calls that I was waiting to receive. After watching Naomi disapear on the yellow bus, I loaded Hannah, Emma, and Toby in our van. "Where are we going, Mama?" Hannah asked. "Ere ee go-ee?" Emma echoed. "It's a surprise," I smiled. "Bye-bye," Toby said cheerily, not caring at all what the destination was, only that we were going.

When we pulled up to the large, wooden, castle-style park, Hannah launched into a melodramatic presentation of thankfulness, "Ooooh, thank you, Mommy! Thank you, thank you, I love this park soooo much. Oh, I'm sooo happy, Mommy! I'm as happy as I ever could be!" She continued, but her line of cheesy appreciation faded away as I stepped out of the van. It reappeared as I opened her sliding door. "Thank you, Mommy! Thay-ay-ay-aynk you!" she sobbed in overly-done sobs of joy. It almost made me feel guilty, like I hadn't taken her to parks enough times before. "Just go play," I laughed.

For nearly an hour Toby couldn't get enough of climbing through the narrow secret passage-ways and up and down endless sets of stairs. Then he spied the picket fence that enclosed the playground, and beyond that: endless adventure. He bounded up a park bench that sat beside the fence, then on to the back of the bench, then to the top rail of the fence. I caught him as he teetered precariously over a four-foot drop, but he wasn't at all grateful for my rescue efforts. He lurched and screamed at having been denied access to the great beyond, and would no longer settle for child's play. There were no choruses of thankfulness to gild our parade back to the van.

Good news greeted me on the answering machine when we arrived home. The GI doctor's office had been able to move Hannah's biopsy up to next Thursday. This means less time for a tired, whiny, malnourished Hannah to wait until she can join Noami on a gluten-free diet for life and hopefully begin to put on some weight and regain some energy. When I told Hannah that she was going to be able to have her biopsy as soon as next week, she opened her mouth wide and with a stunned-speechlessly-happy expression collapsed to the floor in a dramatic pseudo-faint. "Um...are you excited?" I asked dryly. "Oh, Mommy, I'm soooo happy!..." she began again.

Naomi came home from school today equally cheerful. She bounded off the bus with a grin, then raced her sisters for the door, leaving them in her dust. "Wow!" she laughed, "My legs and feet have just been wanting to run and jump all day!" Inside she skipped down the two steps to the snack-stash in our garage, then leaped back up. "My!" she giggled, in apparent amazement at herself, "My legs just keep wanting to run and jump!" She downed some fruit and cashews, then dashed out the back door and ran as fast as she could to the end of the backyard. You cannot grasp the full significance of this if you don't understand that for the last year Naomi has almost always exited the bus after a day at school like a zombie. She would stare blankly, walk slowly, head straight for a snack which she'd chew absent-mindedly, and usually would talk as little as possible. She is wasted, completely empty after a full day, and only maintains composure as long as she is left alone to regain her strength. Any little break in this quiet, monotonous routine would send her into a tailspin of tantrums. (See my previous note: Willing to Try.)

I was so astounded at Naomi's bright eyes, her chatty demeanor, and her leaps of energy that I grabbed my camera and followed her into the backyard. This is the clip I caught of her:



You also can see that I'm being entirely truthful about Hannah's melodramtic ways ("My whole body feels happy because I'm gonna have a surgery!" Matt told her it would be better termed "Silly-act" disease for her). It was a hopeful day. Naomi did have a near melt-down when bedtime went long tonight, but she recovered quickly, and that is a great improvement for her. I would glady spend my days fighting with xanthum gum and sorghum flour to see the spark in my daughter's previously blank eyes; to know that she's had an entire week without headaches, tummy aches, or joint pain; to see her leap around the backyard with life in her again. It is a joy you cannot understand fully unless you've lived it, but anyone who's had a sick child can imagine. I fear writing it down for the possibility that the delicate bubble may burst, but it would be a greater loss not to share my joy today.

Monday, September 27, 2010

Snapshots of Eby Life

Have you ever been really, really tired of potty training?

Are you a sensory seeker?


Are you a princess trapped in a middle-class home?


Have you ever felt like climbing the walls?
Well, you'd fit right in at the Eby house. Come visit us some time!

Sleep Tight...

After waking up two nights in a row with some itchy bug bites, I spent a good portion of the evening yesterday vacuuming every inch of mattress and carpet in our bedroom area. I followed that with washing all the bedding in hot water. It was probably a harmless spider, but with the current bed-bug epidemic, I didn't feel like I was being too careful. Since the comforter we had been using hadn't yet made it through the washer by the time I was ready for bed, I dug through some boxes and found our comforter that had been packed away since we moved out of our house over a year ago.

It's amazing how a smell can instantly wrap you up in memory. The comforter carried the distinct, musty, old mobile-home smell of our previous house. If you hand't lived there for two years you probably would've been repulsed by the odor, but to me it was the essence of home. It smelled familiar and stable, like a happy house in the wide, beautiful Iowa cornfields that was ours once upon a time. Like a little child left in the nursery, I wrapped myself up in that blanket last night and smelled its musty, homey smell. It was sad, but it was comforting. Maybe it drove the bed bugs away too, because I didn't wake with any extra bites.

Naomi woke this morning and dressed herself cheerfully. She focused on finishing each task and was ready nearly half-an-hour before the bus came. She was chatty when she came in the door after school; happily ate a gluten-free, casein-free snack; eagerly packed her own lunch for school tomorrow; volunteered to do her homework; and played nicely with her sisters. We have had days like this before, but they have been very few, especially in the last couple of months. The Naomi of today was a far cry from the disengaged, unfocused, irritable, tantruming six year-old who has been stepping off the school bus lately.


Naomi at the Madison, WI zoo this August
 I felt like knocking on wood, or crossing my fingers, or performing some sort of ritual as I asked her casually, "So, Naomi, how's your tummy doing today?" "Fine," she chirped back as she loaded Little People on a school bus. "Any joints hurt today?" I continued, "Umm..." she thought a moment, "nope." Just as she had no reason to continually complain of stomach and joint pain for the past two months, she also had no reason to suddenly tell me today that she felt fine, except that maybe she did. Though I am reluctant to speak too soon, it seems that five days of being gluten (and casein) free has really helped Naomi and I am hopeful that we will see even more improvements. It is good to feel hopeful again, though I'm still a little wary of crawling into bed tonight.

Saturday, September 25, 2010

Parallel Blossoms, Shared Roots

After tucking the kids in bed tonight I was looking through some pictures from this summer. Of all this summer's happy memories, and there were many, I think this one tops the list. Once upon a time two girls met in seventh grade and became fast friends in eighth. They were inseparable--sharing sleepovers, clothes, haircuts, laughs, hopes, dreams, and adventures of every kind. It was a horrible day when one moved over 200 miles away three years later. They kept in touch, but grew apart. And both were very sad.

Then eight years after they had last spoken, modern technology helped them find each other again. And this is what they discovered...the men they had married would sit and talk theology with each other for hours; each had four children almost exactly the same ages (seven out of eight being girls); they disciplined their children the same way--even using the same phrases to correct them; each had spent the last several years working with teenagers; their lives paralleled in more ways than they would have imagined; and their differences were smaller than they had once thought. Perhaps it was coincidence, or perhaps they shared the three most formative years of their lives and helped to shape who each other would become. And it was a very happy reunion.

Friday, September 24, 2010

An Endoscopy to Envy

After her last serving of gluten-full frozen pizza on Wednesday evening, Naomi and I gave some quick hugs and said good-byes. We left a screaming Toby with Daddy, Hannah, and Emma while we headed out on a "Naomi and Mommy adventure." It was still quite warm at 5:00pm so, as our van lost air conditioning this summer, we drove most of the three-hour drive to the children's hospital with the windows down. I tucked the mapquest directions under a bag beside me so they wouldn't blow out the window and Naomi had to keep a tight hold on the spelling homework she was doing. It was too windy for conversation so I set my mind on the drive and the sunset over the harvest-golden fields. Naomi soon drifted to sleep.

Our pastor had arranged for a family he knew to host us for the night. I pulled in just at dusk. We sat on their deck and shared some conversation over roasted marshmallows, then turned in for an early bedtime. I slept restlessly. The coffee I had drunk to help me through the drive left me jittery. I dreamed twice that I had slept in and missed Naomi's appointment, then woke suddenly to see the glowing red numbers showing just after mid-night. Somewhere around three am Naomi fell out of her bed onto the concrete floor and began crying. At 4:30 am I decided I was up for the day and shut off the alarm that had been set for five. I dressed and ate a bagel in the dark, quiet house, then hid any food and water from Naomi. She was hard to awaken. I pulled her clothes on her, zipped up our bags, and we snuck out of the house in the damp, foggy blackness.

After buckling Naomi in I took a minute to look over the directions to the hospital. The van windows were foggy so I rolled them down to make a turn onto a busy four-lane street. Just as I completed the turn, the directions were sucked out the window and out of sight. I was trapped in a rush of cars traveling 45 miles an-hour. There was no way to stop or try to chase the directions. They could be a mile away with the gusty wind anyway, and I didn't have extra time before Naomi's scheduled 6:15 arrival. I quickly reviewed the directions in my mind--the interstate entrance and exit, the four turns after that--and decided that I remembered enough to get us there. I was relieved as each turn played out as I had remembered it, and, except for a few extra minutes trying to find the right building on the medical campus, the trip went smoothly.

Naomi carried a stuffed pink bunny and her face showed a mix of curiosity and apprehension as we entered the huge building. I talked to her cheerfully about the glass art hanging from the ceiling and the other children we passed. After check-in Naomi settled in to reading "Little House in the Big Woods." When the nurse came to take us back to our room Naomi refused to put down the book and walked the length of several hallways with the book covering her face, still reading. The nurses laughed as we passed their station with Naomi whispering to herself about Pa and his fiddle. I had to pry the book from her fingers so they could weigh her.

The nurses were impressed by more than her love of reading. Naomi sat completely still and quiet, not even flinching, as they drew blood for her pre-procedure lab-work. She didn't complain about being hungry or thirsty. They brought her special presents as rewards for each check-in task she completed well. A child-life specialist came to show Naomi pictures of the procedure room and to let Naomi rub the inside of her "sleepy mask" with bubble-gum scented Lip Smackers chapstick so it would smell good. Naomi giggled at the idea of coloring with chapstick. Her pink bunny was outfitted with an ID bracelet like Naomi's, and was given a special surgical cap to cover his long ears. When Bunny and Naomi were all prepped for the endoscopy Naomi seemed completely at ease following the nurse back to the procedure room. I watched her pad down the hall in her pig-tails and green grippy hospital socks, chatting with the nurse, then settled in for the wait.

After about forty minutes the doctor came to show me some pictures from the endoscopy. She is a very experienced pediatric GI doctor and she felt confident that Naomi's intestines showed damage due to celiac disease and that the official biopsy results we receive next week would confirm this. She called for a dietitian to come and discuss the gluten-free diet with me right there. She said we should begin the diet immediately and that it would need to be for life. She also said that while joint pain is uncommon in celiac disease, it is not unheard of, and that Naomi's joint pain would likely go away once gluten was eliminated from the diet and the immune system settled down, in a few weeks or months.

A few minutes later they wheeled Naomi's bed back to the room where I was waiting. She was groggy but awake, and happy to have a cup of apple juice. A new pillow the shape of a dog's head, with a smiling face was lying beside her. After discussing the ins and outs of the gluten free diet, and reviewing Naomi's discharge instructions we were free to go. It was a hot drive home and I was tired, but it was good to know that the biopsy was done and that Naomi was on the road to better health.

She was upbeat as she described her experience to her sisters and was excited to show them everything the nurses had given her at the hospital: a bead kit, a coloring book, a doggy pillow, three books, and a surgical hat for Bunny. Matt handed me a piece of mail that had come that morning. "What's that?" Hannah said. "Oh," I replied, "it looks like it's the information for your biopsy coming up in November. "Yes!" Hannah grinned, "I can't wait!"

Naomi is back at school today, she took a lunch and a snack that she packed herself. She doesn't seem to mind the diet restrictions much because she knows it will help her to feel better, and I think she's looking forward to that as much as I am.

Tuesday, September 21, 2010

Gar-gar-age!

Toby insists on accompanying Naomi and I to the bus stop each morning. Last winter he was content to sit in his highchair with some cheerios, but now he knows there's a big yellow bus coming out there, and he is not going to be left behind. I've tried, but decided it is not safe to leave him alone in a high-chair anymore if he's determined to get out. He's second only to Houdini. If Toby goes out Hannah and Emma insist on going too, and the weather is nice, so we all put on our sweatshirts and shoes and get an early morning field trip.

This morning Toby was doubly rewarded. Just after we waved good-bye to Naomi and watched the yellow "buh" disappear around the corner, there came a great, black, rumbling garbage truck! I squatted down behind Toby and wrapped an arm around him as the garbage truck pulled up just across the street from us, about 15 feet away. Now Toby's not intimidated by much--strange people who think they need to talk to him and his grandpa Johnson are a little scary--but he's ready to meet most of life's adventures. He stood riveted, his little heart pounding as the truck arm reached out, grabbed the garbage can, and dumped it into the dumpster on the front arms of the truck. Then the truck clanked and roared and began to lift the dumpster up over the top of the truck to dump it. Never taking his eyes from the truck, Toby backed as far up against my body as he could, reached back to grab my other hand, then wrapped my other hand across his body. With his double safety-belt in place he watched, breathless, as the trash dumped into that snorting black behemoth.

And there we sat, for the next five minutes, watching the truck move down the entire length of the street, until it we could barely see the little black box or hear its clamor. It was then that Toby found his voice. Solemnly, respectfully, he whispered, "Gar-gar-age!" It was sad to see it go--the rest of the morning is a complete disappointment for him now. He stands at the window watching, hoping. It may be a long week 'till next Tuesday morning.

Monday, September 20, 2010

Here Between Us

Last night Matt and I lay in bed (our mattress on the floor) talking through our trials. He said something funny (I don't even remember what it was) that I threatened to put on Facebook. "No you dont," he warned, "What I say doesn' t go outside these four..." Knowing what surrounded us was anything but walls, I began to laugh. "These four..." he continued, "well...this stack of boxes, this pile of my Mom's old shirts, this shelf of puzzles, or this folded-up ping-pong table!" We both laughed so hard that Toby started to stir. A moment of silence followed, then more suppressed laughter found it's way out. It felt wonderful to laugh together again.

I rememberd the words of a song that I hadn't listened to in several years by Andrew Peterson, called Clear to Venus:

Well, it isn't home, but it'll do just fine
Still, it isn't home...
...Well I've never seen the spirit wind,
but I have seen the tall grass bend
So I'll follow it wherever it may bring us...
....we can always find a home right here between us

Sunday, September 19, 2010

Another Round

Much of my life I spend on the tips of my toes, like a boxer dancing nimbly around the opposition in the ring. I'm often hit, but I roll away from the punch, recover quickly and begin a counterattack. I know hardships are a part of life. I know they can be a blessing from God. I pray. I trust. I persevere. Usually, before long, the bell rings, and I gratefully return to the stool waiting in the corner. Someone rubs my back and squirts water in my mouth and speaks just the words of encouragement I need. When the next round begins I'm refreshed, ready to throw some punches of my own. The crowd cheers as I lift my hands. I am strong.

But this week I lifted my hands a bit too soon. Three job interviews passed successfully and I could feel the relief of a burden that had been pounding away at us for over a year. As I turned to the crowd I heard them gasp, instead of cheer, and then the pummeling began. Matt's application and interview rejections followed--two powerful blows to an already sore spot that left me staggering. We need income; we need a home; and I am backed into the corner of the ring.

Then all four children tested positive for the celiac gene, with Hannah joining Naomi in full-blown disease state and both carrying two copies of the celiac gene. This is something quite rare and is sometimes termed "super celiac." This means both Matt and I carry the celiac gene and it's very likely that Matt carries two copies and is a super celiac himself. This puts him at very high risk of many celiac complications including a virtually untreatable intestinal cancer, since he has gone many years on a gluten containing diet--a knock to the midsection that left me gasping.

Last night, looking further into other autoimmune disorders that can be associated with celiac, another blow hit. Suddenly I remembered Naomi complaining daily that her ankles and knees hurt. She was born with club feet, so I took her to the orthopedic doctor and he fitted her with orthopedic inserts. That seemed to help some, but the complaints continued. Saturday August 21st (see the blog entry "Petri Dish") Naomi suddenly complained, "Mommy, my ankles hurt, my knees hurt, and my elbows, and my wrists, and my fingers, and my neck...everything hurts." I was a little alarmed by this, because Naomi has a bent for precision and not exaggeration. However, after investigating further and finding that she had a sore throat and a spiking fever I figured that she must be trying to describe body aches that accompany a virus with fever. The next day she was completely fine, except a little more tired, and nobody else caught the fever. I thought little of the whole incident.

Two weeks later, on a Saturday evening this scenario repeated itself almost exactly. About dinner time all of Naomi's joints suddenly hurt, she spiked a fever, went to bed early, and was fine the next day. No one else caught the fever. This raised my concern some, but I figured that she must just be  catching a lot of viruses, as is typical at the beginning of a school year. Last night, as I read about juvenile rheumatoid arthritis, I was stunned to realize that Naomi's symptoms match almost exactly. The only thing that doesn't match is that I've never noticed a rash that is usually present with systemic flare-ups. Her joints hurt everyday, especially in the morning. When I surveyed her this morning she said her ankles, knees, elbows, wrists, and fingers hurt--only her shoulders, hips, and toes felt fine. She's been complaining about this for months and I've paid little attention, writing it off as growing pains or repercussions of her club feet. I haven't rewarded her complaints in any way, yet she persists. Suddenly I realized that I should pay attention.

Juvenile rheumatoid arthritis is an autoimmune disorder that is sometimes present in children with celiac disease, it can range from mild and transitory to severe and crippling. It should be treated with anti-inflammatory medications to reduce swelling and limit joint damage, but Naomi cannot take many anti-inflammatory meds because of her already impaired kidney function. The child who already has more diagnoses than I can remember will need to undergo multiple tests to investigate yet another possible diagnosis. Now my head is spinning, I'm gasping, I raise my gloved hands over my head and cower, but I feel the blows continue. I'm waiting for the bell to ring--just surviving 'till the end of the round. I am weak. Surely there's a respite coming.

Last night the bell sounded as I sang with my three girls one of my favorite Psalms (from The Book of Psalms for Worship, Crown and Covenant 2009). It's Psalm 77A, based on Psalm 77:1-10 and set to the Hymn Tune "He Leadeth Me."

My voice to God aloud I plead
My voice to God, he will me heed
I sought the Lord, I was distressed
I gave my out-stretched hands no rest
My restless soul all through the night
No comfort found in coming light
With thoughts of God my fears arise
My failing spirit faints with sighs

You do not let my eyelids close
I am made speechless by my woes
The days of old I think upon
The years that long ago have gone
I ponder songs I sang at night
My heart and spirit search for light
Forever will the Lord reject?
Can I his favor not expect?

Forever has his kindness ceased
And is he from his word released?
Did God forget to show his grace?
Does wrath his mercy now replace?
Then I replied such questions show
That I my weakness need to know
The Most High has a firm right hand
That through the years shall changeless stand

As my pastor's wife counseled me this week, I can be strengthened by the fact that I have not yet sunk to despair. I still trust--this in itself is evidence of God's sustaining grace in my life. And so I face another day. I collect my thoughts. I call the doctor, again. I ask for more tests, again. I plan child care for the biopsy this week. I collect gluten free recipes. I remember my blessings as I go, at least for another round.

"Let the morning bring me word of your unfailing love,
       for I have put my trust in you.
       Show me the way I should go,
       for to you I lift up my soul." --Psalm 143:8

Friday, September 17, 2010

They're Really Not Twins, No I'm serious, They're Not

As it had been nearly three weeks since my kids had last seen their beloved pediatrician, we went in for a visit again this morning. Actually it was Emma's three-year check-up. We were greeted by a strange nurse. I knew immediately that she wasn't one of the regulars: she called Emma's name instead of saying, "Oh, hey guys, come on back;" and she stared lovingly at Hannah and Emma's matching pig-tail faces and said, "Oh! Twins! They're adorable!"

"Well, actually they're 18 months apart," I said. The nurses' jaw dropped at least two inches and her eyes quickly flashed from Hannah to Emma and back again several times. "No!" she informed me, in obvious disbelief of my authority on the matter, "They just look identical!"

"I know, it's crazy," I said, with as much enthusiasm as I could muster--as if I hadn't had this conversation several dozen times before. Then I threw in for extra flare, "Can you tell which one's older?" Again her eyes flashed, her brow furrowed, but she didn't even have a guess.  Usually when people do guess they guess that Emma's the older one because she has a bit more body mass. Apparently they're identical twins, born 18 months apart.

Why do I bother telling you this? Because it's becoming such a large part of my life. Initially, about a year ago, when people occasionally asked me this question I enjoyed the extra attention, but now that Emma has exactly caught up with Hannah's height and looks, the frequent questions are beginning to become a real bother.

On the way out of the doctor's office I was greeted by a mother of two young boys. Looking at me with Toby on one hip and Hannah and Emma following me, the mother's jaw dropped and she exclaimed, "Twins! How do you do it?!" "Well," I began my usual speech, "They're actually 18 months apart." A look of utter disbelief followed, then the usual eye dance, then a near exact replica of the previous conversation with the nurse.

On the way home we had to stop at Wal-Mart and Meijer. I don't usually attempt three consecutive errands with three small children, but I was desperate this morning. All throughout the isles of Wal-Mart people stared at my adorable twin girls, and yet another stranger initiated the familiar conversation, "Oh, how sweet, are they twins?"

At Meijer I had barely made it past the shop-lift-guard-disguised-as-greeter when another lady smiled broadly at me, "Twins! They're so cute!" By this time I was in a race to grab a few groceries and make it through the check-out before Toby declared war on the safety belt, so I simply smiled back and said, "Yeah, it's a real challenge!" The lady laughed,"I bet!" and was about to go on her way when Hannah announced, "We're NOT twins! I'm four and Emma's only three!" "I fwee!" Emma chimed in. Oops...caught, and another two minutes down the drain trying to explain that I am also astounded by their adorable similarity in size and looks despite their age difference.

As we walked away to find our last round of pre-biopsy frozen pizza and bread, Hannah began to sing, to the tune of three blind mice:

We're not twins
We're not twins
I am older
I am older
We are nah-at twi-ih-ins
We are nah-at twi-ih-ins
We're not twins
We're not twins

Though this song elicited some funny looks from other shoppers, nobody else stopped me to ask me if they were twins. Perhaps I should prep Hannah to sing this song whenever we go out in public, it would save a lot of trouble.

Thursday, September 16, 2010

Health on the Horizon

The nurse from our pediatrician's office called today to give me the results of Hannah, Emma, and Toby's celiac screening. She didn't understand it all, so she's sending me a copy. All she could say was that the lab indicated that Toby and Emma have genes that put them at high risk of developing celiac disease, but blood work said Emma probably doesn't currently have it and Toby might. Hannah's genetic screen said she was at "extremely high" risk of developing celiac and blood work indicated she almost certainly already has celiac disease (tTG IgA was 60, with >10 being positive for celiac).

This might explain Toby's perpetual diarrhea (something our recent trip to the allergy doc couldn't explain), and Hannah's borderline "failure to thrive" state (she's dropped from the 70th to below the 10th percentiles in weight and her height has nearly leveled off). The allergist assured me that Toby probably just has "chronic diarrhea of infancy" and it will go away eventually. Hannah's pediatrician has repeatedly assured me that Hannah's severe growth drop-off is probably normal. Naomi's original pediatrician didn't see any reason to test her for gluten-sensitivities. I guess I'm glad I got a second opinion on that!

So the tally is: two kids with current celiac disease, one who might have it currently but certainly has high genetic risk of developing it, and one who doesn't likely have it now but has high genetic risk of developing it. Matt and I can't afford testing on ourselves right now (one day he will have a job...), but I think those kinds of genetic results really show that at least one of us definitely is passing that gene on to the kids, and Hannah's "extremely high" genetic risk I think means that she has two copies of the celiac-linked gene. If I'm right about that, then both Matt and I may have that gene. I have to wait until I get the results in my hands and can interpret them further. I really need to discuss this with Naomi's pediatric GI doc to see if she will diagnose all the kids on the basis of Naomi's biopsy and the other's genetic results. It would seem silly to put them all through biopsies.

I feel the need to insert here a loud "I AM VINDICATED!" (maybe) to all the doctors who told me in high school that my chronic stomach aches and fatigue were in my head. Also insert here nasty looks at Dr. Thomas who said to my dad, "Maybe she's just a wimp," Dr. Somebody from Ames who told me I was a "picture of health", Dr. Someone-else from Mayo Clinic who said he wasn't impressed with my symptoms, and Dr. Olberding who put me on Paxil...........Okay, I feel better.

I think I see a completely gluten-free house in our future. On the upside, maybe better health is in our future too--that would be a nice change.

Under Chinese

Hannah made up a little song about a year ago that has become an all-time favorite in our house. It's set roughly to the tune of "If You're Happy and You Know It."

On top of the house is the sky
On top of the house is the sky
No word about me
Sic-silla-sic-see
On top of the house is the sky

This morning, while I was brushing my hair and teeth, I heard Hannah singing some new verses.

And under the house is the world
And under the house is the world...

And under the world is Chinese
And under the world is Chinese...

And under Chinese is my mom
And under Chinese is my mom
No word about me
Sic-silla-sic-see
And under Chinese is my mom

I wondered why I had been banished to orbit under China as I finished pulling my hair into a pony-tail. I didn't have to ask, though. As soon as I emerged Hannah said, "I need some breakfast, and I was waiting so long I thought you were under Chinese!"

Wednesday, September 15, 2010

Road Trip

Four kids + 2 weary adults + 1 mini-van + 411 miles = 3 magna-doodles, 40 books, 21 snacks, 6 water bottles, 4 potty stops, 4 changes of clothing, 3 mops of messy hair, 8 McDoubles, 2 large fries, and 1 embarrassing public moment.

Mental math is not my strength, but this is one equation I have memorized, and it almost always works out.

Last Friday Emma proudly watched as I slathered pink frosting on a home-made "sprinkle" cake. I scattered the sprinkles on top, strung up some pink streamers, and tried to hide the stress I felt for Emma's sake. After a quick family party we strapped the kids into our loaded mini-van and headed to Iowa. Matt had a job interview near my hometown on Monday morning, so we took the weekend to visit my family. The trip out was fairly uneventful as the kids slept most of the way (see above equation and subtract the McDonald's menu and the embarrassing public moment, phew!).

Toby found his six and eight year old boy cousins to be delightful participants in his new favorite sport: extreme wrestling by surprise attack. Once Jesse figured out why Toby was screeching, yanking on his shirt, and body-slamming him on the ground, they had a gratifying weekend of  tussles. The girls found everything Wyatt and Jesse did to be absolutely hilarious, inducing rounds of giggles, which further spurred-on the boys' antics. Grandpa ran the kiddy wagon ride which continuously circled the block. We even had a second birthday party for Emma, complete with a giant sparkly birthday hat and a purple feather-boa for Emma. (I am not too sure about the quality of the boa, as we spent the next two days picking up purple chicken feathers, and the boa had to come home in a zip-lock bag).

Matt successfully completed his interview, though I don't think it will be a job for him. ("And Mr. Eby, how would you feel about ministering to a Satanist?") Then we packed up again for the trip home. It wasn't long before dinner was called for. Toby despised the McDouble and french fries served to him, and promptly ensured that he wouldn't have to eat them by depositing them on the floor. I spent the next half-hour chasing him around McDonalds, stopping now and then for another bite of food as we passed our table. He made friends with a girl filling out an application, attempted to slip back into the food-preparation area, then bolted for the door as soon as a strange man opened it to leave. Indigestion followed.

Back in the car Toby decided he was hungry, and we soon needed an after-dinner potty-stop. Spotting a rest area 30 miles ahead on the atlas, we decided to hold out for that over a local gas-station. Thirty minutes and four cranky kids later we arrived at the rest area, which was closed. The next exit had a Shell station and a nearby Wal-Mart. We opted for the Wal-Mart. Matt had a phone call to make, so I dug out pajamas for the kids and rounded up four water-bottles to refill. I strolled into Wal-mart with a line of kids holding hands and making train noises, and a diaper bag large enough to shop-lift a fish tank. After handing each girl her pajamas and assigning her a potty-stall, I strapped Toby to the changing table--all under control.

Just as I had Toby's diaper off, another lady came in and headed for the first stall. The door was open, so she was a bit startled to find Emma with her pants down. "Oh, sorry," I said a little sheepishly. "Oh, that's OK," she laughed. She turned back around, then laughed even harder as Hannah waddled out with her pants around her legs. "Mommy," Hannah whined, "I can't reach the toilet paper." The lady offered to stand by Toby, with his diaper still off, as I secured some toilet paper for Hannah. Emma then came out from her stall with her pants around her legs to see what all the commotion was. "Mommy," Naomi called from behind her closed stall, "I can't get my pajama pants over my shoes." I wiped Hannah's bottom and plunked her PJ's in her hands, sat Emma on the toilet, unsnagged Naomi's pajamas from her shoes, then remembered Toby's diaper-less bottom. Thankfully, the changing table was still dry, and the lady was clearly more amused than annoyed. I completed Toby's diaper change while the other lady used the restroom, then put Toby's pajamas on while she helped all three of my girls wash their hands. (Add to the equation above "1 angel sighting").

We are home now, and things are fairly back to normal. I spent two hours in the doctor's office with Toby yesterday, attempting to console him after 16 pin-pricks and occupy him for an eternity in a 7'x7' white room, all to find out that he's allergic to dairy and peanuts--two things I really already knew. This morning we await the arrival of a new baby--Hannah's expecting any minute, again--and Toby has collected each cordless phone and brought them to me declaring, "NO, NO! No, no phone!" Ahhh, back to the daily grind.

Thursday, September 9, 2010

Emma Peace Turns Three

Three years ago today I was staying alone in a room at the University of Iowa Hospital. After six weeks of complications, monitoring, and worry, I awaited the induction of my third baby. It was a month before her due date. There was much concern for her health. The following is an excerpt from a journal entry I later wrote:

It was a sunny, lazy Sunday morning for me. I had no where to go and nothing to do. I wrote some in my journal to the baby. Then I realized that I really hadn't felt the baby move at all that morning. When the nurse came in to check on me I told her. She promptly returned with some monitoring equipment on a cart and hooked me up for a non-stress test. I tried to tell her not to bother, since this baby had never passed one before, but she went ahead anyway. Half-an-hour later it was concluded that baby had flunked the non-stress test with her heart rate at a constant 120 bpm, as always. I was sent to the labor and delivery ward to have a biophysical profile conducted. This time the doctor and I were both alarmed at what we saw on the ultrasound. The baby's heart was beating but she was lying completely motionless in my womb. There were no breathing movements, no body movements, just eerie stillness. The doctor was consulted and she told them to induce my labor that afternoon.


I called Matt and told him to hurry down, but it was several hours before the induction was underway. Pitocin was started, followed by several hours of mild contractions. At 8:20pm the doctor broke my water and contractions became suddenly strong. Surprised by the strength of the contractions and anticipating hours of pain, at 8:45 I rescinded my previous vow to natural labor and called for an epidural. By 9:00 the pain was unbearable. I was required to stay in bed with an oxygen mask on my face because the baby's heart rate was so flat. Contractions were now back to back with almost no break, there was no way to find relief. The nurse turned off the pitocin completely and assured me that the anesthesiologist was on his way. She called for a doctor to check my progress but I was only 6cm dilated. I began to shake and shiver and feel immense pressure. Again, the nurse called for the doctor to check me, sensing that delivery was imminent, but at 9:20pm the doctor declared me still only 6cm dilated. Just two minutes later the nurse saw me grimace and hold my breath. "Don't push," she said, then after looking, "Don't push! Don't push! The baby's here!" I wanted to tell her I wasn't pushing, but I truly couldn't speak from the pain. "There she is!" Matt said, astonished, as the nurse quickly caught our daughter. The room hadn't been prepped for delivery--the nurse hadn't even had time to put gloves on--but Emma Peace Eby arrived at 9:24pm on Sunday September 9th, 2007. She was eerily still and quiet. The nurse assured me that baby Emma was fine as she called for the doctor. Just a minute later doctors and nurses flooded the room. They swept Emma away to the warmer to be examined. It was a whirl of activity, I just tried to recover.

After a long examination the neonatologist said Emma had weighed in at a healthy 7 lbs 2 ozs and her lungs were fine, but he would need to take her straight to intensive care for some testing to determine the cause of the polyhydramnios and for monitoring because she was pre-term, had had fetal distress, and because of her kidney condition. I asked him to let me hold and nurse her for just a few minutes first. He smiled softly at me and agreed. Emma was calm and sleepy, not at all alert as Naomi and Hannah had been. She refused to nurse. They told me this was normal for a baby who had just been through such a rapid birth. After a kiss I let them take her away. Matt followed her to the NICU and my mom stayed to keep me company as I recovered. Around midnight Matt returned from the NICU saying they hadn't really been able to determine the cause of the polyhydramnios, but there was some question as to Emma's ability to swallow so I would not be allowed to nurse her yet. I was moved to my old room in the postpartum ward. It was strange to be away from my baby.

I was up early the next morning and eager to visit Emma. It was a large, confusing NICU. Emma was in a warmer in a small room in Bay 2. She was awake and fussing. That was good to see. I finally got the go-ahead to nurse her, and after a few awkward tries she caught on. I watched as other babies in the NICU were left to cry as the busy nurses had to tend to others. I knew I would be discharged the next morning, but I could not go home and leave my baby an hour away. I needed to be near her to establish breastfeeding and to give her that human touch that is so important in the early days. I called the Ronald McDonald house down the street, but they did not have any openings for me. I prayed that God would make a way for me to stay with Emma until she was discharged.

The next morning I packed up my bags and moved out of my postpartum room. I sat on the recliner in Emma's tiny cubicle watching the commotion around us, wondering where I would stay. The doctor came by on rounds. I heard him discussing Emma's case with some med students just outside Emma's room so I invited myself to the conversation. He said that Emma's creatinine was fine at 0.9--a huge relief--but that her sodium and white cell counts were high and she would need to be monitored until those came down. I told him how I wanted to stay with Emma. He thought a moment, then spoke to his students, "Isn't there an opening in the new Bay 5? Let's move Emma there." Bay 5 was a unit of the NICU for more stable babies, opened just 2 weeks earlier. It had large private rooms with private baths where parents could room in with their baby. I hadn't even known it existed. I was amazed at God's provision for us.

Emma ended up staying a total of eight long days in the NICU. I became very lonely and frustrated as each day passed and I was told it would be another day or two. My milk was very slow in coming in, which left Emma dehydrated and requiring IV fluids. She needed IV antibiotics for a suspected infection because of her high white cell count and she couldn't seem to gain any weight. Finally, on Sunday September 16th, my milk supply was well established, Emma was hydrated, her sodium and white cell counts were down and she had stopped losing weight. Matt came to pick us up and take us for the happy drive home.

All of Cono gathered around as I came to church that evening with precious baby Emma snuggled in a sling in front of me. Many prayers had been answered and many thanks were offered to God that evening. True to her name Emma was a peaceful baby. She remains a sweet, laid back little girl.
 
Happy 3rd Birthday, Emma Peace, we are so glad God gave you to us!

Wednesday, September 8, 2010

Brawn, Blood, and Band-Aids

I had the pleasure of waking up at 5:30 this morning in order to take four small children in to have their blood drawn. Some of the tests were to be drawn first thing in the morning, and we had to drive half-an-hour to a certain clinic. It was an accomplishment marching four kids into the quiet waiting room, dressed, combed, fed, and calm by 7:30am. That was the high point of the visit.

Hannah began dancing and said she needed to go potty. Matt thought he smelled something foul under Toby's overalls. He took the two of them to find a restroom. I tried to fill out paperwork on all four kids, but Emma began yelling, "I wan go PAH-EE! I have pee in my bah-um!" She repeated that phrase a few dozen more times while I finished the paperwork. Then came the 45 minute registration process. The doctor's orders didn't match the tests in their system, a supervisor offered no help, and  a phone call was placed to the doctor's office. I kept peeking over my shoulder through the glass booth to Matt, struggling to contain kids in the waiting room. He shot me a "what the heck is taking so long?" look. I shot back "sorry, this really isn't my fault, I'd help you if I could."

When they finally called us back to a room, the kids had wandered into a lobby between two sets of automatic-opening sliding glass doors. Matt called for the kids to come. The girls came. Toby grinned a devilish grin and ran the other way. The glass doors to the outside slid open, Toby hesitated and they closed again, smashing his left hand. Matt jumped to the door and sacrificed one of his own fingers to pry it open again. Toby was left with a red welt and a small bruise, but no real damage. He did not consider the ice pack that they offered him to be helpful in the least.

Naomi set a brave example as the phlebotomist drew her blood--no crying, no complaining, just a couple sneaky tears that were hard to hold back. Hannah and Emma were not to be outdone in bravery, and they felt proud as they collected their stickers and their praise. Toby struggled against Daddy's grasp as soon as the ladies came near him. He screamed, he writhed, snot poured out of his nose, and he eventually succeeded in pulling the needle out of the vain with a dramatic little spatter of blood. Unfortunately this only earned him a stick in the other arm as well. This time I swaddled him tightly, and three of us pinned him down. Even so, we could barely hold his arm still enough. The phlebotomist took a stab at the wriggling vein and happened to hit it right. The assistant's eyes showed how impressed she was with Toby. "He's stronger than the three of us combined!" she said in all seriousness.

See the welt on his left wrist
We are home now, recovering. The girls' arms bear tiny prick-marks, barely visible. Their shirts proclaim their bravery with Disney princess stickers. Toby's left wrist bears a red welt and a bruise. The insides of his elbows each have small blue welts. Now and then he stops to examine his wounds, and a shutter runs down his spine. An array of Toy Story stickers evidence his courage. Wear them proudly Toby, you earned them.

Tuesday, September 7, 2010

The Engineer, the Soup Cook, and the Extinct Species

This bright day dawned with Matt collecting the trash. Toby was drawn like a moth to a flame. It was fascinating to watch Daddy lift a thirty-gallon trash bag. Toby wasn't sure whether to try lifting that enormous bag all by himself first, or just to dig in and see what treasures he could find. Unfortunately, he was apprehended and locked in a high chair with some utterly uninspiring cheerios, while Daddy had all the fun himself.

Emma wasn't feeling nearly as ambitious. She woke up coughing, wheezing, and running a fever. She watched, glassy-eyed, as Hannah constructed a tower from upside-down stacking cups. "Whoa!" Hannah yelled as she placed the last cup, "I built the biggest tower! It's the Serious Tower!" I raised an eyebrow and thought a minute, "do you mean the Sears tower?" "Oh yeah, the Sears tower," she said.

A nurse from the Riley pediatric GI clinic called to schedule Noami's biopsy, and a phone tag game ensued. The nurse told me the first available appointment was November 4th. I told her about the severity of Naomi's symptoms and that I thought it would be pretty cruel to make a six year old wait that long when she's so sick. "Um," the nurse replied, "let me check with the doctor and get back to you." Tag, she's it.

By 11:30am Emma had run out of gas. She opted out of lunch and fell asleep on the couch. Hannah and I sat alone at lunch, so I pretended to be an old friend who had met her for lunch at a restaurant. "So, Miss Hannah," I probed, "What do you fill your days with?" Hannah grinned at me, "Happy," she said.

An hour later I checked Emma's temp, 103 now. Her breathing was fast and labored, so I gave her a nebulizer treatment and put a phone call in to my friends at the pediatrician's office. Emma attempted to get up to play, but ended up lying on a blanket on the floor. I picked her up and started reading "Curious George" to her. She was wiggling around like she was uncomfortable on my lap as we neared the end of the book. Assuming she would be more comfortable lying on the couch again, I hurried through the last few pages and said, "The End." Thankfully, I set the book down before Emma threw up. My crossed legs ended up acting as a bowl to contain most of the vomit soup that poured out. I called to Matt for a bowl and a roll of paper towels. He brought them and arrived just as Emma had served me my fourth and final helping. We sat a minute, trying to figure out what to move first, then settled on moving everything to the bathtub for a big hose-down. One bath, one load of laundry, one carpet-scrub, and one shower followed.

Of course the peds GI nurse called back while I was in the shower. At least she bore good news, and the biopsy was scheduled for September 23rd. Strange, since their first available opening was Novemeber 4th.

When my mother-in-law came home from work she sniffed the air, "Smells like someone's been cleaning." I told her to be glad it was the cleaning products she smelled. I explained that Emma was sick and running a fever. "Yeah," said Hannah, "she has a hot, not a cold." I spent the evening washing my hands and passing around hand sanitizer. Toby thought it was such a good idea that he attempted to cleanse his insides with it as well. Luckily, I caught that one before he figured out how to press down on the pump.

Toby wasn't too keen on bedtime tonight. He stood in his crib, howling and shrieking, raking his little claws through the crib rails, attempting to catch anyone who ventured near. He latched on to Matt's shirt and shook it up and down, squealing at obtaining his prey. "Toby," Matt said dryly, "Why are you such a velociraptor?" "Ah-ci-wap-or!" Toby squalled. Then he screamed, lunged over the top rail, caught my shirt and attempted to drag me over the crib rail into his lair. All the girls giggled. I uncurled each white-knuckled claw from my shirt, quickly kissed his head, and dodged his next grasp. "Good-night, girls," I called, "and good-night, velociraptor." He shrieked again as his prey left him alone and completely unoccupied in the dark.

At least Hannah filled her day with happy. Actually, minus of course the lap full of vomit soup, my day was pretty filled with happy too.

Monday, September 6, 2010

Bananas on the Menu

Here are a few highlights from our labor day:

I took Hannah, Emma, and Toby with me to the grocery store to pick up a few things for a family cookout. In the check-out Hannah decided to march around in circles whooping in various tones of silly and making ridiculous faces at innocent passers-by. Emma, of course, followed Hannah exactly, whooping and making even more ridiculous faces, because it's always more difficult to imitate a ridiculous face than to come up with your own. Toby was very much amused and bounced up and down excitedly in the confines of the shopping cart seat, laughing. The man checking me out paid little attention, but when finished asked, "What? No bananas for the monkeys?"

After an afternoon of family festivities, Emma was feeling quite drowsy at dinner. She nodded off while sitting in her chair. When I commented that Toby had found himself a Pepsi in the garage earlier, but I had taken it away because he really didn't need any caffeine; Emma opened her eyes, laughed, then dropped back off to sleep and began snoring.

By 7:15pm I had decided it was Toby's bedtime, less because he was actually tired and more because I needed him to be in his bed. Around 7:45 Matt was leading the girls downstairs to bed when, through the floorboards, I heard Toby begin laughing uproariously. Matt reported that  he found Toby lying on his back in the crib with both feet in the air, tickling his feet saying, "Tickle, tickle, tickle, tickle, ahahahahaaaaa!" He truly was tickled with himself, and the fun lasted through the rest of bedtime.

Hey, way to turn lemons into lemonade, Little Buddy. No one can stop you from enjoying your evening. They can lock you in your crib, but they can't keep you from tickling  your toes. He apparently wore himself out because one cup of soy milk later he was dead asleep. You know, the next time I find myself lying awake at night, maybe I'll try tickling my toes.

Sunday, September 5, 2010

Be Still My Soul

Naomi's having trouble sleeping. Her tummy aches, again. You probably know the hopeless feeling of not being able to make your child feel better, but do you know the frustration of knowing what is causing the pain and being told to keep giving it to them? That's a new one for me.

Naomi began complaining of tummy aches when she was three. I searched for answers then. Her pediatrician then told me she was probably constipated. That's a nice easy answer to get me out of the office. I stopped asking him. Feeling it might be related to her kidney/liver disease, I turned to her doctors at the National Institutes of Health. The doctor there replied that tummy aches are common and have to do with the increased blood pressure from all the scar tissue in the liver. She told me to have Naomi drink water and rest. That sounded like a reasonable answer to me, and that has been our plan ever since. In fact, I wrote up a medical information sheet for Naomi's first grade teacher and school nurse. One item was how to deal with Naomi's frequent tummy aches. Only now I know I was wrong. It's hard to realize I've been telling my child to drink water and rest every time she has a tummy ache, all the while continuing to feed her the toxin that's causing them.

After looking in to it, I am convinced that it is in Naomi's best interest to have the biopsy done to confirm the celiac diagnosis, but I am frustrated by the wait time to have it done. The GI doctor hasn't even called me back to schedule the biopsy yet. So we continue to give Naomi her two-to-three servings of poison gluten every day to ensure that her bowels will be good and irritated when they biopsy them. I read on the Internet under the list of celiac symptoms on one website: stomach pain, fatigue, low mood, irritability. That's an understatement! It's too tempting to call that GI doctor when Naomi is screaming uncontrollably or crying that her tummy aches, and ask her just how long I'm supposed to keep waiting for the biopsy. Of course, tomorrow is Labor Day, so that phone call will have to wait.

Not really able to do anything else for Naomi tonight, I snuggled with her on the couch and said, "Is it hard to be Naomi sometimes?" She wiped a tear, "Yeah." Then we sang one of my favorite songs:

Be still my soul, the Lord is on thy side
Bear patiently thy cross of grief or pain
Leave to thy God to order and provide
In every change he faithful will remain
Be still my soul, thy best thy heavenly friend
Through thorny ways leads to a joyful end

Be still my soul, thy God doth undertake
To guide the future as he has the past
Thy hope thy confidence let nothing shake
All now mysterious shall be bright at last
Be still my soul the wind and waves still know
His voice who ruled them while he dwelt below

I tucked her back in bed with a kiss. "I hope your tummy feels better tomorrow," I said. I know full-well it won't, but it's the best I can do for her, at least until Tuesday.

Saturday, September 4, 2010

Caution: Wet Floor on the Move

We went out to eat Thursday night. Some friends offered to take us out, and, while dining out isn't exactly relaxing with four small children, it certainly beats cooking and cleaning-up at home. It was a good night to be with friends, if only I had spent more time with them and less time commuting to and from the buffet lines.

I always turn heads when I walk up to the buffet, pick up four plates, and quickly fill each one with identical portions. For some reason people don't automatically realize that I have four small children I'm serving. Usually I just raise my eyebrows as high as they'll go and declare, "Man, I'm hungry tonight!" Then I set the plates on my table, return to the bar for napkins and silverware, head to the drink bar for four drinks, then head back to the buffet line for my own plate of food. Picking up my fifth plate-full of food, I comment to the man shaving my fifth slice of ham, "I told you I was hungry."

Just about the time I sit down to eat, I see Toby decorating the floor with macaroni noodles, and by the time we complete his refresher-course in meal-time etiquette, Naomi and Emma have finished their plates of food and are requesting seconds. "I like the ham, Mommy," Naomi says sweetly, "May I have more ham?" Emma echoes, "I ah mo am, Mom-my?" Back to the ham-man I go for two more slices of ham. "It's good ham," I explain.

Half-way through my plate of food all four kids are ready for dessert. Ham-man eyes me as I pick up four vanilla cup-cakes from the dessert bar. Naomi squints her eyes at me, "Mommy, I wanted chocolate." Matt quickly offers to eat the vanilla one, so I snag a fifth cupcake. As most everybody else is finishing up, I make a third trip to the desert bar to find something for myself. "I don't really like this cupcake," Hannah whines, "can I have cookie?" "I ah googie?" Emma echoes. "Coooo-kieeee," Toby growls. I take my fourth trip to the dessert bar and grab three cookies.

Half-way through my dessert Toby has inhaled the entire cookie and has had enough of sitting still. He begins screaming, attempting to wriggle out from under the safety strap on his highchair. Desperate to buy myself five minutes I take a fifth trip to the desert bar, dump a spoonful of tiny chocolate-chips on a plate and spread them around. Toby is occupied for at least three minutes trying to grab each individual chocolate-chip and stuff it in his mouth. I hurry back to my seat--time is running out.

"Mommy, I need to go potty," Naomi announces. "Me too," Hannah says, stretching after her leisurely dinner. I interrupt Matt's passionate conversation and speak slowly and clearly, "I'm taking Naomi and Hannah to the bathroom. You are in charge of Emma and Toby." "Okay," he smiles agreeably. I plunk the tub of baby wipes in front of Matt as a suggestion and lead Naomi and Hannah to the bathroom. After washing and drying three pairs of hands we head back out. I wonder briefly what state I will find my children in.

Quickly I survey the restaurant. The table is empty. Matt is at the drink bar engaged in theological conversation with a stranger from Milwaukee. Emma is beside him. Oh crap! Where's Toby?! I glance around--no sign of him. But why is that three-foot yellow "Caution Wet Floor" pillar bobbing along between the tables? Toby is visibly pleased with his accomplishment. Strangers at table by dessert bar are less than amused. Poor them, it must be hard not having a sense of humor. Pillar is returned to spill by drink bar. Toby screams at loss of friend. Narrowed-eyed glare is given to Matt before I smile and shake stranger-from-Milwaukee's hand. Who's ready for bed?

Friday, September 3, 2010

Leave the Laundry, Tend to the Fire

You know you have a lot on your mind when you load the washing machine with dirty clothes, then clean the lint trap on the dryer and start the dryer instead of the washer. One half-hour later my dirty clothes were just as dirty, and my clean clothes were twice as dry. Perhaps I needed to forget the laundry and just talk to someone, but Toby doesn't listen very attentively and Hannah, well, Hannah has talking needs of her own. It was hard to find a spare minute to sit down and type today too. There's been a lot happening at the Eby house.

This morning Emma put on her brand-new, too-big, pink backpack and posed in front of the flowers outside for her first day of pre-school. She was beaming, "Ow I bi nou go cool wigh Nomi!" ("Now I big enough go school like Naomi!") I thought she might be timid at such a new experience but she jumped right into the activity. It helps that there are only seven children in the class and they're all at least as speech-challenged as Emma. She was telling her teacher about her new light-up shoes when I left, but the teacher wasn't understanding any of it. Hopefully they'll learn her language soon, or better yet, maybe she'll learn to speak ours.

As I was waiting to pick Emma up from preschool two hours later, multiple fire truck and paramedic trucks whizzed past the school with sirens blaring. There's always a moment where I wonder if they might be headed to my house, but as we live in a huge city the odds are about one in ten-thousand. So I quickly set my mind to praising my round-faced, bright-eyed, baby on completing her first day of school. She told me all about it. I understood only "play" and "crackers," but that sounded like fun to me.

As we pulled into our neighborhood I had to carefully squeeze our van between the nine fire and paramedic trucks lining the street. I rolled down my window to ask one of the on-lookers what had happened. "House fire," he said, "they just broke down the door." There were tiny wisps of smoke rising from a house directly across from our house, just one street over. There must have been thirty firemen talking on radios, running with hoses, or just standing around the house. I hurried into our home, scooped up Toby, and walked the kids over to fill their eyes with all the firetrucks and firemen they could handle. Toby, for once in his life, stood still and quiet beside his sisters, mesmerized. The action was winding down by that time. The small fire had been put out, and the firemen were setting up fans to air out the house and rolling up their hoses again. We talked about the special clothes the firemen wore and the tools they used, and I congratulated myself on a sucessful field-trip for my kids.

We spent most of the afternoon digging some boxes that we needed out of the massive pile of our belongings in the garage. Then a friend needed my consolation and advice on the phone. I ended up microwaving leftovers for dinner. I didn't get to the internet research on celiac disease I had wanted to do today. I didn't ever dry that load of laundry. I didn't fold the two loads waiting impatiently in laundry baskets. I never got to have that talk that would have helped to unwind the tangled web of thoughts in my brain. Somedays you have to be thankful for seeing firemen and let the laundry pile up. Somedays the talk you need to have has to wait while you give a friend the talk she needs to have. Somedays what you thought you needed that day wasn't really what you needed after all.

Thursday, September 2, 2010

When it rains...

Naomi on her birthday
Our continual search to understand and help Naomi led us back to the pediatrician this July. Sometimes I feel ridiculous telling the poor doctor that I'm still not satisfied with the information we have on Naomi. Naomi already has enough diagnoses to mystify any doctor. Yet somehow I felt we didn't have the whole picture. I am so glad I spoke up.

The doctor ordered an extensive battery of tests that took somewhere around 15 tubes of blood--chromosomal tests, allergy tests, thyroid tests...more than I could remember. This morning we brought Naomi in for an appointment to hear the results. I was expecting to hear some more chromosomal or genetic information that may help us tie together all of her diagnoses. To my surprise, all further chromosomal and genetic tests came back normal. Instead we walked away with yet another scary and stupefying diagnosis: celiac disease.

How can one child have so many things wrong with her, yet there is seemingly no link between any of them--just that sometimes when it rains, it pours? From what I understand (and my understanding is still limited), celiac disease is an autoimmune disorder, meaning the body produces antibodies to attack gluten rather than digesting it normally. The test to measure one antibody (tissue transglutaminase) says that a value less than 10 is negative, 10-30 is low positive, and greater than 30 is positive for celiac. Naomi's level was 128! Naomi has a pediatric gastroenterologist at Riley Children's Hospital in Indianapolis already for her liver disease. The pediatrician we saw this morning placed an immediate call to the peds GI doc at Riley and told her the numbers. Even the GI doc was floored with Naomi's levels.

I guess we were on the right track removing gluten from her diet, except that now the doctor has ordered that we give her at least two to three good helpings of gluten per day for the next six weeks. We will then head to Riley, three hours away, to have an intestinal biopsy done, which will confirm the diagnosis. After that, no gluten, for life.

Next week I will have to take all four of my children in to have blood drawn. Naomi needs to have more tests run to check for other autoimmune issues and to see what the celiac disease may have damaged so far. Hannah, Emma, and Toby will all need to be checked for celiac's. That should be a fun morning--pack in diaper bag: excedrin, ear plugs, lollipops, and fun band-aids. Lunch: definitely McDonalds. Naomi needs to get her fill of eating in restaraunts for the next six weeks. After the biopsy I'm sure that will be limited.

My head isn't sure which direction to travel today. I'm so glad we found out that she had celiac disease at a young age. Many people get much more sick and wait many years to find out. Yet I feel guilty that she's had this so long and we never knew. How different would her first six years have been if we had known? But how would we have known? Her only real symptoms are her frequent tummy aches, which we were told were linked to her liver fibrosis; and her extreme mood swings, which could be linked to any number of things. I am happy that help is on the way for Naomi. I am frustrated that it will take another few months before we can remove all the gluten from her system and hope to see improvement. Matt and I really should be checked for the disease too, but that will have to wait until we have employment and health insurance again. There are too many thoughts to digest in one afternoon; somehow typing seems to help me sort it out.

The three girls and I on a carousel ride this July
Appropriately, it has been raining here all day. Drab, gray skies hang above. Drizzly rain gives way to downpours now and then. I wouldn't mind seeing the sun. There's always that silver lining though: I have a six-week break from GFCF cooking--tonight we're going out to eat.

Wednesday, September 1, 2010

Gluten-Free, Casein-Free, Appreciation-Free Cooking

I've tried my hand at gluten-free, casein-free (GFCF) cooking before. One of the families I nannied for before I had kids had a child on a GFCF diet, and Emma was allergic to wheat for the first year of her life. But this past week has been a real stretch for me.

The natural and most common starch replacements for wheat would be potatoes and rice, but Naomi likes neither. There are GFCF replacement breads and cereals made to mimic common wheat-filled snacks, but they are certainly more expensive and almost always less tasty. The replacements for milk are rice, soy, or almond milk and things like soy yogurt and soy cheese. These undoubtedly taste much worse, at least if you're used to a thick glass of chocolate milk, a rich block of cheddar cheese, and a granola bar for snack after school.

Naomi has to pack her own lunches for school now. This was exciting at first, but her GFCF crackers with GFCF lunch meat, applesauce, and soy-milk are quickly losing their appeal next to the cheese pizza on the tray beside her. Of course, someone had a birthday and brought cupcakes which she couldn't eat, and she's decided that every variety of expensive GFCF granola bars I've tried are unpalatable.

Dinner no longer comes from the freezer and the microwave, oh I miss those days. No, Mommy now spends from four o'clock to seven o'clock each evening cooking from scratch with strange ingredients like tapioca flour and xanthum gum, serving meals that people are struggling to choke down, and washing every dish, pot, pan, and utensil that went into preparing the less-than-well-received meal.

Last night I tried a recipe for "Salmon Balls" from the Internet. I should have thrown the batch away the instant I mixed up the final ingredients and couldn't stomach the smell, but I was sure that some chemical reaction would happen inside the oven that would make them mouth-wateringly delicious. Warning number two was when my father-in-law came home from work and exclaimed, "What is that awful smell?!"

Matt was quick to defend me, "I'm hoping it's Toby's diaper." He checked Toby's diaper, then announced, "Nope, it's dinner." We sat down to eat, and Matt was visibly relieved when I admitted the salmon balls were disgusting. At least I had the GFCF version of Oreos, which everyone agrees are fantastic, on hand for a quick palette-washing.

I know it will get better. I have multiple friends who have cooked for this diet before, and there are endless resources on the Internet to be taken advantage of. I will get used to what brands I can and cannot buy when shopping. I will find my favorite recipes, whisk them up in double-batches, and put half away in the freezer. Once in a while I will pull a pre-made dinner from the freezer and enjoy a night off. Someday I will be lauded as a GFCF cooking genius. For now I will have to stomach the smell of the rotting salmon-balls in my garbage can.

I went with meat and veggies in the crock-pot tonight. Safe, proven, and easy tonight; tomorrow: another cooking adventure.

Willing to Try

Naomi on her first day of kindergarten
First grade has proven to be much more challenging for Naomi than I had hoped. After a fairy-tale kindergarten year, I was hoping for at least one more year of "happily ever after," but that was not to be. It seems that first-graders are already more aware of physical and social differences, and Naomi is already being set apart. She spends each recess swinging by herself. She eats her lunch at an assigned table and talks to no one. According to her reports she talks to no one the entire day. Last Friday a boy from her class stood behind her in line to get on the bus and repeatedly made loud, rude noises at her. She summoned her courage and asked him softly to "please stop," but he found this all the more encouraging for his game. On Monday after school another girl asked the boy to do it again and see what Naomi would do. Already she is the brunt of jokes for being nothing but sweet, quiet,...and different.

Naomi has also apparently been bottling up her emotions all day at school in order to behave well there. I am glad that she is in control at school, but she comes home more loaded than a two-liter of soda that's spent the day at Six-Flags. The slightest thing will set her off into violent tantrums. It isn't an issue of being spoiled, she's never been rewarded for a tantrum in her life, she truly loses control of herself. It sometimes reminds me of a seizure, and it's downright scary to witness.

Naomi's pediatrician believes she may benefit from a gluten-free, casein-free (wheat-free, dairy-free) diet. Some children with these social and emotional issues do improve when gluten and casein are strictly witheld. We've been toying with the idea of trying it for nearly a year now, but the added cost, work, and social stigma of a special diet have held us back until now.

Last Wednesday I broke Naomi's routine and picked her up from school early for an orthopedic doctor appointment--just a quick twenty-minute stop on the way home so the nurse-practitioner could check the fit of the inserts in her shoes. All was well until I was in the middle of speaking with the nurse and Naomi decided she needed her snack--now. They have a policy against food in the exam room so I asked Naomi to wait until we got outside and she broke down--into kicking, crying, awful behavior. I know the nurse was thinking the same thing I would have been thinking before I had Naomi: "what an awful, spoiled child; that mother must not have a clue about discipline." I am certainly a more humble mother now; not every child responds to consistent, firm, loving discipline, not every child can.

After her hour-long fit of rage through the waiting room, through the parking lot, in the car, and in the house, she finally wore out. For the past six years I have given consequences for this, but it doesn't stop the behavior. Instead of consequences this time, I held her. I rocked her. I asked her if she liked the way it felt when she acted like that. She looked at me--her face speckled with tiny pink dots (blood vessels that had broken from the intensity of her screaming), with purple bags under her wet, empty eyes, "no." I asked her if she wanted to stop acting that way when she was angry, "yes." I asked her if she would let me help her, "yes." We worked together to make a plan for what she could do instead of screaming and fighting when she was angry, and she hasn't had a bit of gluten or casein since that day. We are going to give it a good two or three month trial to see if it helps with her social awareness and ability to control her emotions.

One year later, and minus six teeth
So far our new approach to Naomi's tantrums, help instead of discipline, has disarmed her some and she is more willing to take steps to calm herself down before we reach full-blown proportions. The diet has either had no effect after one week or has actually worsened her behavior. We knew to expect this potential "withdrawl" period of worsened behavior for a week or two, and I am almost encouraged by it, because it shows a probable link between her diet and her behavior. Hopefully when all the gluten and casein are out of her system we will see an improvement, many families do, but some families don't. Either way, I feel we have to try.