Monday, August 18, 2008


Reagan slept through the night last night, not waking until 7am this morning. Very nice. I can't even begin to explain how much we appreciate that. After so many months (actually about 15months) of having to get up every couple hours all night every night, we are so grateful to finally be sleeping again. Today we had a full day of therapy. This morning Reagan had OT and then this afternoon she had PT. Usually I don't schedule them on the same day but all the therapists were going to be tied up in a seminar all day tomorrow so we had no choice. Amazingly, she did very well for both! She's just been so sweet and well behaved lately. I think vigabatrin is her "happy medicine". I did finally hear back from her doctor 5pm! He didn't really have anything to say for himself, but I was just happy to hear from him I didn't dare complain. Reagan's seizures are still about the same (a little worse than they were at the lower dose)...his suggestion is to keep her where she is for a few more days to see if she improves. The thing is we want her seizures to decrease as we increase the medicine...not the other way around. I asked him about the HBOT...he said that he doesn't think it can hurt (although there are not really any scientific studies proving it's benefits either). I asked him about the Botox...he said he has no worries about it and that it should be fine to use on Reagan (we've rescheduled this for Oct). So there it is. Please pray that her seizures decrease...actually we want them to STOP!!! We only have one more increase to go (from 875mg to 1000mg), so it needs to happen now! Sorry...but I'm sick of waiting on due time!

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