Charlie's jerking has been pretty well under control for almost a week. It's weird how she will bounce around and have more or less jerking on the same meds. Anyway, with less jerking comes better satting, better digestion, less pain, ect. So it's been pretty pleasant. I don't know how long it will last. Yesterday she had one episode and some trouble breathing. Her airway seems to be tightening up again so we'll probably increase her baclofen. I did a little research on airway spasticity and it seems baclofen is the drug of choice, so the doctor hit the nail on the head with that one. But in the study I read, all the kids were also spastic quad. DD is mixed tone and mostly hypotonic. Weird. Why would ONLY her airway be spastic?
Our genetics appointment is July 10th. Wish us luck! I'm SO nervous. Mostly because I'm afraid we'll go in there and be told they found nothing. I look at her eyes in every single pic I take now....they just don't look like ANYONE in the family! Or maybe we'll find out on the 10th that it's nothing and I must have a great-great grandmother that had slanty eyes. Who knows?
3 comments:
I'm so glad that CHarlie seems to be doing better this week. I am fairly certain it means her days are more comfortable too.
Is there any chance that the slant to her eyes is due to a muscle issue? COuld one of her little facial muscles be tight and causing the slant?
She's low tone pretty much everywhere, which is why her mouth hangs open all the time. I looked at her baby pics and it's noticible from the time she started opening her eyes.
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