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Orthodontia wanted Elijah to start seeing a dentist regularly, to get more comfortable with having his mouth examined and poked and prodded. He did amazingly well with oral exam after oral exam yesterday, opening his mouth wide and moving his head into whatever position they needed to be able to see, but he still wasn't comfortable with them actually putting anything into his mouth. His teeth looked fine, and they didn't need to put anything in his mouth yesterday, but at some point in time they will, so we need to keep working on that. I've contacted a pediatric dentist who was the dentist for a cleft team at one point in his career (and is retired military, incidentally) and am waiting to hear back from him. (Thanks, Mama, for finding him!)
Audiology found hearing loss in his left ear--normal hearing loss for a child with the unusual eustachian tubes that come along with a cleft palate. Both his ear tubes are out, and ENT says the left is free of fluid, while the right has some fluid. Both ear-drums are retracted. We are going back in two months for a follow-up appointment with audiology and ENT concurrently, and if there's no improvement, we're looking at another set of ear tubes. Your "typical" child with chronic ear infections (which Elijah does not have--he's had two or maybe three ear infections thus far, period) starts to outgrow them between three and five years of age, but kids with clefts are often still needing tubes at age eight. Since Elijah has articulation problems when his hearing is perfect, he really can't afford to add hearing difficulties to the mix.
I really appreciated the craniofacial nurse practitioner and the plastic surgeon on this team. The surgeons on our prior cleft team are very good at what they do, but the new ones--wow. We have never had such a laid back, low-stress cleft team appointment. The nurse practitioner is helping me juggle the onslaught of scheduling, trying to make sure that we don't have any more snafus, and trying to get as many of our appointments as possible on the same day so that I don't have to make long drive any more than necessary. She took a long time with us at our appointment yesterday, and a long time again today on the phone with me, answering all of my questions, and asking many questions of her own.
And the surgeon. We didn't see her for much more than ten minutes, I don't think, but she was wonderful. She was patient with Elijah's noncooperation, she made eye contact with both him and me when she was speaking to us, and, although I had made no comment, either to her or the nurse practitioner, about Elijah's oral feeding, the surgeon made a point of telling me that many, many children who have undergone distraction and palate repair are still not eating orally by Elijah's age, and that, although she knows it must have been, and must still be, very difficult for me, we're not out of the ordinary, or doing anything wrong. I was so. impressed.
My biggest concern after yesterday's appointments, is Elijah's growth and weight gain. He weighed 29 pounds, 15 1/2 ounces yesterday. At his cardiology appointment in January, he weighed 29 pounds, 1 ounce. That's a weight gain of 14 ounces in six months--less than half of what a typical three-year-old ought to have gained (and in the preceeding six months, he had gained two pounds and five ounces, so it's also less than half of what he himself has been gaining). We already have a nutrition appointment scheduled for early September, to check on things from the are-we-putting-in-enough-calories end of things. I'm also waiting to hear from his cardiologist to see what, if anything, she'd like to do to check things from the is-he-using-more-calories-than-usual end of things. I've been a little concerned about his energy level and tiredness over the past few months, and that, with the results of his echo in January and the lack of weight gain since then just made me wonder.
So that's what's going on over the next two to three months. Long-term, there's potential for a nasoendoscopic evaluation* for velopharyngeal insufficiency (VPI). Elijah's speech is pronouncedly hypernasal with audible nasal air emission. If it hasn't improved in about a year-and-a-half (the age by which kids are usually able to sit still and tolerate the exam) they'll want to scope him to see whether his palate is too short to allow him to speak correctly, or whether he's just in the habit of speaking incorrectly. If the latter, speech therapy should take care of the problem. If the former, surgery will be indicated. I believe the surgeon said that a pharyngeal flap would be likely with the type of palate repair he has, but I'm not sure about that. In any event, we can't cross that bridge till we've come to it.
*Here's a video of a self-conducted nasoendoscopy, narrated by the doctor who is both giving and receiving the exam.
***
When we got in the car after our last appointment, I felt completely wiped out. Though I hadn't felt particularly anxious for the last six hours, I suddenly realized that my neck and shoulders were so tense they were almost cramping up. Thinking it through now to write it all down is causing a similar reaction. I keep having to take a deep breath and consciously relax and stretch my neck and shoulders.
I feel like I'm struggling to evaluate and understand our lives again after these appointments. When we have a long stretch without doctors visits or therapy sessions, I slip into feeling like a "normal" family with a (pretty much) "normal" kid. And then we have an apopintment, and his aortic root is perhaps a little more dilated, or his vision has gone downhill and he needs glasses and minor surgery, or his speech deteriorates and there's a possibility of another palate surgery in the future, or he's not gaining weight, and I get yanked out of "normal" back into "our son has health problems."
I feel like I'm making a mountain out of a molehill over this--at this point, none of the stuff we're dealing with is that big of a deal--and I hesitate to even voice it. Because, while for the most part I can understand where people are coming from, and it doesn't bother me when the dental hygenist compares her grandson's two-week bout with pink-eye to Elijah's nearly four months in the ICU, every once in a while it really gets under my skin. And I don't want to turn around and do the same thing to the people out there who are dealing with life-threatening and life-disrupting health problems--whining about my paper-cut while they stand there spurting blood from an artery.
But every time something new comes up with Elijah's health, to varying degrees I go through the whole song and dance again, the whole process of mentally adjusting to the idea that Elijah is not just a typical kid, and may never be "typical" health-wise. And it seems silly, because so much of what's going on with him at this point is stuff that "typical" people deal with: Glasses? No big deal; my sister, my mother, my brother, and I all wear them. Astigmatism? I've got one too. Flat feet? So what; my sister and my sister-in-law and I all deal with some sort of knee and/or foot and/or gait trouble that causes pain and requires orthotics. None of that has ever seemed like an affliction to me. Maybe it's just that with Elijah those normal things come on top of other less normal things, and it all comes against the background of three-and-a-half months that were more mountain than molehill. In any event, I think I keep waiting, subconsciously, for the point where we're done with this merry-go-round and I can get off. And after every new appointment, I have to readjust to the fact that, however gentle the ride, we're still on it, and it may never end.
***
Writing is thinking, for me, in many ways. I figure out what I'm really thinking, how I'm really feeling, as I try to express it coherently for a reader, whether real or imagined. It helps me to think (write) about the underlying causes of my reactions to things, helps me to place whatever's happening in context and go on with life. As I write my way to a better understanding of what I'm thinking, I come back again to the realization that I am grateful, profoundly grateful, both for how gentle and enjoyable the ride really is these days, and for the fact that we've been allowed to ride at all--even when it was more like a roller coaster than a merry-go-round.
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