Wednesday, September 19, 2018

A Sleep Study- But Not with the Kid You Think

First I want to start by thanking everyone who left kind and supportive comments or said a prayer yesterday or today. It means more to me than you guys know and I'm going to reply to each and every comment.

I've been brainstorming and thinking and I'm definitely feeling better today, and I have some ideas about how to move forward reaching those neighbors that we still haven't gotten ahold of yet.

The last twenty four hours have been a little more hectic than I expected, because a certain 10 year old who spent Monday night with me at the Children's Hospital an hour and a half away, for a last minute scheduled sleep study, ended up coming down with a stomach bug this morning.

Because this child never, ever complains about being sick, even when she is horribly sick, I knew that when she said she had "a pretty bad stomach ache" to take it seriously and tell her she was not setting foot on the school bus, lest I receive a seriously bad phone call from the office later in the day.

She had a sleep study because her doctor decided that, if the insurance company was going to refuse to do the genetic test to see if she has the same gene mutations as Tessie, she could at least do a sleep study to see if she was in immediate danger from the sleep condition that Tessie has (when Sadie was little I told her doctor that she'd turned blue and stopped breathing and he told me I was a paranoid first time mother with a very pale child that probably just looked blue sometimes because of her paleness... so that, with the gene that she has a 25% chance of having, is also the reason for the concern).

So we ended up at the hospital and we haven't heard anything yet, which I think has to be somewhat good news, because if it was anything very bad we would have heard back yesterday (when they put Tessie on oxygen they called us the same day).


  1. Your family sounds like mine... if the odds are slim then probably someone here has it. Although I suppose autism isn't all that rare anymore... but narcolepsy isn't too common. Hope the sleep study comes back very boringly normal. Boring can be awesome! When my son had his first sleep study the lady made a comment that we would have our answer soon. I knew immediately what was up :(

    1. That's exactly what our pediatrician who moved out of state used to say (the "if the odds are slim then probably someone here has it" part). Several times with Tessie I would say "but what are the chances?" and she would sigh and say "with your kids?" and raise her eyebrows. LOL. I am really hoping that two days without hearing anything mean we're in for super boring results. There was one point during the night when she was sleeping and lots of red lights were flashing on the machine, but I'm hoping that just meant that something wasn't picking up for a second, because I know that can happen to... so fingers crossed!

      And the comment you guys got totally sounds like what we heard with Tessie. Our first sleep tech said "you know a lot of babies outgrow these things so don't worry too much." And I was like... um... okay? And figured that probably wasn't a good sign that time around.


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