There are still a couple stragglers not back yet, but most of the metabolic and genetic test results are back. It's not the news I was hoping for. Aidan has several metabolic and genetic abnormalities. This points directly at progressive epilepsy. Not to mention an overall dismal outlook for his health and mortality. This changes everything. His appt with the new neurologist is Monday. I'm really hoping this guy will be better. And we'll get on the waiting list for a Geneticist. I really want to cut back his schedule in light of this new info. It's going to be hard, though, because they are things he likes so much. He's been asking to go back to preschool everyday since his time there. And he really enjoys his time with Austin, his new DT. The only ones he seems to not care about are the very ones he needs the most. :) OT, PT, and Speech.
But after his super long day actually at the school for preschool, then DT, then OT, it was clearly too much. He paid for it dearly, with a major increase in seizures. And now he's sick. A half hour ago he had 103 fever temp. Not sure what he's caught, but I'm really hoping it doesn't make it's way to Damon! Or keep him from going to the neurologist Monday.
Mindi was just talking to me about the change in his movements. When she first got to know Aidan he moved easily and fluidly. Now every movement is jerky and awkward. We both realized at the same time, that's why his laugh no longer sounds genuine. It's the jerkiness, not that he's faking it. Like an idiot, I've shown dislike for his "fake" laugh. I'm sorry sweet boy.
No comments:
Post a Comment