Ah, the annual appointment at the Downs Clinic. It's always informative. Always. This year we learned that Micah never forgets a thing. He'd been to that particular building once in his entire life, and remembered the room he had blood drawn in. While they changed things up, and the lab is now elsewhere, Micah was not about to sit in that room and patiently wait around for a doctor to do his thing. Instead, he sat in the hall. It's safe in hallways. Nobody draws blood there. We had to request another room. His compliance level went from .001 to 9 just like that.
The Downs Clinic is the most accommodating place on earth. I love that about them. They just "get" our kids. Which is good, because it's their business to understand kids with Downs.
So while there wasn't much to discuss other than his incredible growth (more out than up) and his ongoing sleep issues, those two things were sufficient to fill the time and learn from. I learned that drinking too much milk can contribute to anemia. Awesome. This was brought up because the boy drinks a quarter gallon of milk daily. If not more. We have seriously got to wean him away from that stuff.
But the sleep thing was a whole other issue in itself. Turns out, all those problems that I've cited in the past add up to one conclusion: sleep apnea. And not just a mild "he stops breathing every now and again" kind of condition either. We're talking a full-blown case with all the classic symptoms that screams I NEED INTERVENTION.
So what does intervention look like? I'm glad you asked. I did, too. First up is a sleep study to be conducted. The very thought of a sleep study has me mentally rocking in a fetal position in a dark closet. The Noncompliant One will not understand, nor will he accept, the intrusive tubes and monitors that are required for this to happen. And sedation is not an option since the goal of the event is to monitor what he does when he's sleeping normally. While I'll simply be an innocent onlooker to the whole event, I already hurt for my son who is going to fight this with every fiber of his being.
And after the study is conducted (and we're praying that it can be, and he won't need a repeat because of noncompliance), surgery is most likely going to happen to help him breathe easier and sleep better. Those 12 surgical procedures he's had done have worked wonders on me. I fear the surgery far less than I do the study. And still, surgery is never anything to be scoffed at. In the event that surgery cannot fix what needs fixing, Micah may need a C-Pap machine. Refer to my excitement over the sleep study to gauge how I'd feel about that. Not that I don't want it, and it's way less invasive than surgery, and would definitely help Micah, but yeh.
So to get as much information as possible in order to make a decision, we further discussed the impacts of his lack of sleep. Why I didn't do the addition myself is a good question, but sometimes you need an outside perspective to see things I guess. The frustration/anger issues that have recently cropped up could be stemming from the lack of speech, or lack of sleep. Or both. And the lack of speech is certainly not helped by a brain muddled by sleep deprivation. So it all boils down to the fact that more sleep would make Micah a happier, more compliant boy, and he may even gain a few more words in his vocabulary. So how can I NOT do this?
Here's where I'm asking (begging!) for your input. Have you experienced a sleep study? Do you have a child that's been subjected to one? Do you have apnea experience that you can share? I'm just desperate for information at this point. And I value the opinions of those who have walked the path ahead of us.
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