Wednesday, January 23, 2013

All Over Town with Five Kids in Five Degrees

Elijah caught his breath and his eyes froze in fear as I carried him out into the below-zero wind chills yesterday morning. I ran him to the warm van, where he relaxed enough to breathe again and let out his scream of protest. Of course I would have to spend the entire day running around town on the coldest day of the year. After last years' mild winter and the warm beginning to this winter, I think even my older kids had forgotten what real cold was. Even dressed in long-johns and sweaters, they shivered in the van.

At our home-school art class we shivered again as the church struggled to warm up. Elijah carried his apple with him, and munched happily as he toddled around inspecting drawers and cupboards and locked doors. Naomi, Hannah, Emma, and Toby painted watercolor snow-scenes with the nine other children in their class.

And then we added chaos to cold. Elijah realized he was up past nap time and decided to spend the next hour staging an arm-flailing, food-flinging, red-faced protest while I attempted to help the other kids finish up their collages. He flung his apple off the side of the high-chair where he'd been banished after I declared him beyond redemption. The apple narrowly missed the head of a baby girl who was crawling nearby. She happily accepted the Rice Chex shower that followed, but Elijah wasn't out to make anybody happy.

"Mommy!" Toby whined, "I can't cut this! You cut it!"

"Would you please cut this?" I corrected him, picking up his scissors.

"Mommy! Look at my picture!" Hannah called out above the commotion.

"Oh, that's beautiful, honey," I called back, with one eye on Elijah, one eye on the scissors I was snipping with, and my other eye on her picture.

"Mrs. Eby?" queried Naomi's shark-obsessed friend, "could you help me cut out these purple polka-dots for my (and here he inserted the name of a prehistoric shark species that probably only thirty human beings have ever heard of, which was recreated from a jaw bone discovered high on a mountain somewhere). Since we don't know what (prehistoric jaw-bone shark name here) really looked like I'm going to make mine with purple polka dots, but I can't cut them out. Could you cut them out for me?" He handed me a paper with pea-sized circles drawn all over it before I could refuse.

"Sure, I'd be glad to help you," I smiled back.

I quickly snipped out the polka-dots, admired Emma's collage, served up some sandwiches and clementines, and then rushed my kids back out into the arctic. Elijah got a cat-nap on the way to my friend's house, but woke to scream again when I dropped him in her arms, along with Naomi and Hannah, before I ran back to my car.

"Where are we going, Mommy?" Toby asked for the thirteenth time.

"We're going to the hospital so you and Emma can have ultrasounds and a blood draw," I answered for the thirteenth time.

The last nine years of sleep deprivation seemed to catch up with me as we entered the warm, dark ultrasound exam room. I sat yawning and struggling to stay awake as the technician in training and her mentor looked for Toby's kidneys. "The right kidney is laying sideways under his belly button, stuck to the bottom of the left," I advised them, to speed things up a little. "We want to make sure that as he grows the ureters don't get kinked, and we're also checking to be sure there are still no signs of cystic kidney disease, because two of his sisters have polycystic kidney disease."

The bean-shaped kidney came into view, right where I had suggested it would be. I was happy to see as she measured it, that it had grown a couple centimeters in the last two years. When he was a baby I had been told that the right kidney would probably just shrivel up and disappear, but there it was: healthy and growing, even if weirdly out of place.

Time passed even more slowly as we waited...and waited for the technicians to get the pictures approved by the radiologist. "I'm so sorry that took so long," one apologized as they reentered the room. "The radiologist is all into teaching us, so he was telling us all about polycystic kidney disease as he looked at the pictures. And I was like 'Yeah, yeah, his sister has that too.'"

I laughed with them and helped Emma hop up onto the bed for her scan. Oh those radiologists, acting like their technicians had all the time in the world to learn about rare diseases...wait a minute. Why would he be teaching them about polycystic kidney disease while looking at Toby's pictures, and before the technicians informed him that Emma and Naomi had cystic kidneys? Suddenly my heart was in my throat, and all I could think was, "I must have heard that wrong. I'm sure I did. Maybe the radiologist had looked up our kids' histories beforehand and seen that it was in the family. Maybe he was teaching the technicians why Toby's kidneys weren't cystic. Please let that be it."

I tried to focus on Emma's scan, to watch the fuzzy, black and white beans on the screen. Her left kidney was bigger than her right, the same as Naomi's...the same as Toby's. It was going to be a long two or three days now, waiting for the radiologist's report.

Toby and Emma were both very brave for their blood draws, and were richly rewarded, heading back to the van decorated with stickers. I wondered what state I would find Elijah in as I drove to pick up the kids, but Elijah was wandering around calmly when I arrived. He let out a little relieved cry and ran to me when he saw me.

Once we arrived home I had exactly 35 minutes to pull dinner from the crock-pot, serve five kids, put Hannah's hair up in a bun, change Elijah, and rush everybody back out the door in time for Hannah's ballet class. We arrived at the dance studio to find it mostly deserted, with two other families sitting in their cars, looking as bewildered as we were. After waiting in the van a few minutes, the man in the car beside me informed me that he'd called the dance office and they told him classes were cancelled because the schools had cancelled for the cold.

This made my feat of serving dinner in record time seem less heroic and more futile. Hannah was deflated as well. But at least I wouldn't have to try to keep a very over-tired Elijah happy in a waiting room for 30 minutes. Just one more stop before home.

I surprised my mother-in-law by arriving ahead of schedule. Then the older kids ran wild in the basement with their cousins for an hour while my sister-in-law and I sorted through some clothes that had been passed down to us from a neighbor family, but Elijah was done.  Done with running around town, done with people outside his nuclear family, done with being appeased by apples, just...done. He wailed in his high chair, arching his back, and flinging his Rice Chex to the floor again. I couldn't get my kids and my bags packed up fast enough.

After a stop by the Goodwill drop-off to rid myself of the leftover hand-me-down clothes, and a stop by the pharmacy drive through to pick up some medicated lotion for Elijah's eczema, we finally arrived home at 7:30pm. I had just tucked Elijah into his crib when Matt came home from work at 7:45. Coats, shoes, and bags were strewn across the floor. Dinner dishes still sat on the table. The laundry hamper overflowed in my office. I thought to myself that it was going to take an entire day at home just to recover from this one.

And now it's time to start recovery day. At least Elijah slept well last night.

Thursday, January 17, 2013

Seven Appointments with Five Kids in Nine Days

After spending nine days at my parents' house over New Year's, the last nine days have been a rough reintroduction to the world of homeschooling, housekeeping, cooking, and dragging children to doctors appointments. We arrived home at 1:00am last Wednesday morning. Thursday morning I was already packing my kids into the van to drive to see one of Naomi's doctors about her newly developing thyroid condition. Saturday morning I dropped my younger four kids at Matt's parents' house while I took Naomi to the dentist for her first cavity filling. It turns out this little half-day expedition was in vain, since the dentist had failed to inform me that they would need medical release forms filled out by Naomi's liver and kidney doctors before they would give her any anesthetic. How thoughtful of them.

Sunday morning was the usual rush-everyone-out-the-door-in-time-to-arrive-ten-minutes-late-to-church routine. Monday I was blessed with the double joy of taking all five of my children to Emma's yearly eye exam, where the ophthalmologist seems to regard the extra four children in the tiny room (no matter how well behaved they are) with about as much welcome as four extra pygmy goats. Here, when I expressed for the third year in a row my concerns about Emma's peripheral vision, because, oh I don't know, continually running into door frames and other objects on the periphery of her vision doesn't seem normal to me, and the ophthalmologist assured me for the third year in a row that all the insides of Emma's eyes looked healthy, I was offered the overwhelmingly insightful and helpful response, "Maybe that's just her personality." Ah, yes. Of course. I see so clearly now. My five year old daughter enjoys running into door frames. Thank you doctor. Emma, the goats, and I look forward to our return next January where I hope to learn more intriguing insights into my children's personalities from you.

After this appointment we rushed home, crammed down some sandwiches, and rushed back out for Naomi's orthopedic doctor appointment so that he could check the inserts in her shoes and say, "Yep, they look fine. Keep doing those stretches and wearing your shoes, honey." I was eager to collapse at home after this appointment, but no--before we could leave the exam room Toby began to whine that he couldn't find his little blue car, and we were granted an extra ten minutes in the room looking under and behind every object that could possibly conceal a hot wheels car. Only after the nurse donned gloves and dug through the trash can for us did I remember that I had confiscated the car from Toby in the waiting room and had put it in my pocket. I did apologize, but I think what they really wanted was for us to exit the building. Quickly. Fortunately, this was in line with my own greatest wish at the time.

Tuesday we attended our home school art class in the morning, and ballet class in the evening. Wednesday morning Naomi had her annual eye exam. Today, to top off my week of clinic hopping, I got to drive five small children 90 minutes each way to our annual kidney doctor check ups. I am happy to report that Naomi, Emma, and Toby all seem to be doing well with their different varieties of kidney maladies. Sometime in the next couple weeks I'll need to take Emma and Toby for blood work and ultrasounds since it's been two entire years since we've checked those things on them, but I expect that their conditions are stable.

After spending the last 10 days thinking about virtually nothing but my children's health, I have done some more thinking and research and am considering applying to the National Institutes of Health's Undiagnosed Disease Clinic. I am hoping that they can help me track down the illusive genetic mutation that is at the bottom of all (or at least some) of my kids' health issues including: cystic kidneys, liver fibrosis, crossed-eyes, club feet, heart valve problems, autoimmune diseases, asthma, allergies, chronic ear infections, speech apraxia, near-sightedness, motor-skill delays, and autistic tendencies. We've had some genes tested, but haven't yet found a mutation. There are a few more genes I've come across in my research that could explain a lot for my children, and if we could nail down the mutation I might have some idea of how to help my kids, or at least what to expect in the future. Applying to the program is an extensive process, but if accepted my family would be flown to Maryland and given all the necessary diagnostic testing for free, in the interest of contributing to the Human Genome Project. I really want to do this...but I might need to take a few days to recover first.

Elijah's To-Do List 1/16/13

  1. Wake Mommy promptly at 7:00am. We've got a lot to do today.
  2. Drop Kix from highchair to floor. Demand apple for breakfast instead--the whole apple, no wimpy slices.
  3. Eat half of apple. Demand to be set free from high chair prison.
  4. Demand the privilege of carrying apple with you wherever you go.
  5. Drop apple like a hot potato when you spy the orange peels in the garbage.
  6. Pull orange peels from garbage and walk around house happily munching them and smacking lips. Leave dribbles and snippets of orange peel behind you, Hansel fashion.
  7. Reclaim apple from under kitchen table. Enjoy a few bites. Drop apple in garbage. Reconsider.
  8. Reclaim apple and enjoy it all the way to the core. Deposit core under kitchen table.
  9. Stand at baby gate, bang it back and forth, and demand to be allowed access to the great upstairs.
  10. Engage in a giggle party while playing "Two Little Monkeys Jumping on the Bed" with Toby.
  11. Investigate diaper pail. Reconsider.
  12. Play for 1.6 seconds with an age-appropriate toy. Reconsider.
  13. Stand at baby gate, bang it back and forth, and demand to be allowed access to the more desirable downstairs.
  14. Pull onion netting from garbage and gleefully fling it around and around to evenly distribute thin, crispy onion-peel shavings across the floor of Mommy's office.
  15. Confiscate broom from Mommy and demand to clean up your own mess, thank you very much.
  16. Leave office with onion netting hooked to bottom of sock to distribute some more peelings.
  17. Spy bathroom door that has been left open. Bingo.
  18. Quickly investigate plunger, toilet bowl brush, and shampoo bottles before being ratted out by siblings.
  19. Chew on hairbrush and protest the injustice loudly while being evicted.
  20. Open drawer containing winter clothing. Chew on hand-knitted mittens. Reconsider.
  21. Throw entire contents of winter clothing drawer on floor instead.
  22. Succumb to nap when Mommy turns on the ocean waves sound and hands you a fleecy blanket. 
  23. Eat heartily at lunch to keep up your strength.
  24. Watch Mommy chop apples for crock-pot pork roast dinner. Beg for whole apple (slices will not do).
  25. Carry prize apple around and around house taking bites and jabboring happily.
  26. Rub apple back and forth across the carpet, just for kicks.
  27. Abandon apple when Kleenex box comes in sight.
  28. Pull Kleenex from box, shred to pieces. Offer some to Mommy. Wipe nose on sleeve.
  29. Look for Apple. Take bite from raw sweet potato instead. Resume search for apple.
  30. Scream in horror when Mommy washes apple.
  31. Fall for the old ocean-waves-sound-and-fleece-blanket-trick again. Drat.
  32. Wake quietly and secretly pull half of the contents of the dirty laundry hamper through the bars of your crib. Knock the lid off of the diaper pail. Wail pitifully when Mommy finds you surrounded by dirty socks and underwear in a room that smells like three-day old diapers.
  33. Request an apple for an after-nap snack. Scream and fling banana to floor because you haven't quite learned the words for, "I said 'apple' you imbecile!"
  34. Announce with authority, "Da, da, da, da, DAAAA!" when Daddy comes home from work. 
  35. Cling to Daddy's leg and refuse to let him take his shoes off or change out of his scrubs before he tickles you and holds you up to touch the ceiling.
  36. Trample on the "Toy Story 3 Yahtzee" game board that all four of your siblings were attempting play with Daddy, because you haven't yet learned how to yell, "MY Daddy!"
  37. Sneak up the stairs when you see that the gate has been left open. Stand innocently in the kids' room and explain, "Ma wanee gablay yagunoh ya," when mommy asks what you are doing up there.
  38. Fall happily to sleep at 8:30pm after an exhausting day.
  39. Wake happily at 1:34 am, entirely refreshed and ready to begin the next one.

Sunday, January 6, 2013

Week (or More) at Grandma's

Last Sunday we packed up the five kids and every free square inch around them in our minivan and drove over seven hours to my parents' house for a week of Christmas vacation. Elijah spent the first four days running a fever over 103 and clinging to my hip like a barnacle. Toby coughed and whined and stared blankly much of the trip. I didn't get terribly ill, but I did lose my voice completely for 24 hours, which made it difficult to converse with my family, discipline my children, or even be polite to the lady at the shoe store who probably wondered why I was refused to speak to her.

On Thursday night things hit an all-time low when I was suddenly afflicted with a horrific migraine headache (only the third of my lifetime) and was confined to laying still in a dark room while listening to my mom, my dad, and my husband trying to get dinner for the kids--no small task with all of our dietary restrictions. My mom said something like, "Here, Doug, you're a chemist. These are potato buds. Pretend you're in a lab and cook these according to directions." I mustered my strength to try to croak with my inflamed vocal cords, "You'll have to substitute rice milk for the milk, oh...and canola oil for the butter!"

By Friday we were all on the mend (except for my poor mother who picked up our sore throat), Elijah was becoming more accustomed to Grandma and Grandpa's house, and we were beginning to enjoy our time together more. We spent an evening at my sister's house where the kids played hide and seek and ran cars down a track together. Naomi found a cozy spot in her cousin's bedroom to read five of his chapter books. He later remarked to my sister, "I've never seen anyone read as fast as Naomi! She didn't read one book last night, she read five!"

Saturday we had a little birthday party for my sister (with an 11th anniversary celebration for Matt and I on the side). It wasn't a half-bad visit, all in all, but by today I think we were all ready for my family to head home again. We finished the laundry this morning, gathered all the markers and hot wheels cars from under the furniture, and piled everything back in the van. Somehow it all fit, and we were on the road by 2:30pm, which isn't too bad for our family. Matt put a theological lecture on the audio system and we settled if for the long drive.

Twenty miles from town, on a hilly rural highway, before we'd even reached the interstate, our van began to sputter, then slowed to a stop in the driveway of a farmer at the top of a hill. Three children and a farmer, all in snowsuits, looked at us...and we looked back. Crap. And now what?

After our brains resumed functioning we called my parents, who drove out in two cars to pick us all up. And we called AAA, who has lost about a thousand dollars on us in the last year, to come and tow our van, once again. And Matt began calling co-workers to see who could possibly cover his shift tomorrow. And I asked the kids, "Alright. Who prayed for us to spend more time at Grandma's?" Hannah's little face lit up. "I did!!" she happily admitted. I then passed out some peanut butter cookies to keep up moral while we awaited rescue.

We unloaded our van and packed all our things into the trunks of my parents' cars. Then we drove back to town and unloaded all or our things back into their house, where Toby promptly had a diarrhea explosion all over his pants. We're getting settled in again now, and we are thankful: thankful the car didn't break down three hours into our trip, thankful that we're all safe and warm, thankful that AAA doesn't have any rules against people like us being members of their awesome club, and thankful that Toby's explosion didn't happen in a car seat. Tonight we'll eat leftovers and play cards, and I pray the van will be fixed tomorrow, because as lovely as this little vacation has been, I'm starting to get anxious to be back in our normal boring routine.