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.

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