>> Tuesday, December 9, 2014
Because when we fail, we fail in spectacular ways at this house.
Bug did make it one week. But tonight threw at least part of that week into doubt.
At 10:55 he fell asleep. At 11:08, I said to Glenn: He made it! At 11:09 he had a small seizure. I swore, held him and kissed his head. He fell back asleep. And promptly had another seizure.
He did this 9 times last night. All the while, the seizure intensity was building. At 6:00am he had a 2 minute T/C and has been sleeping peacefully since.
Yesterday, he woke up kind of pensive, not very smiley and now I think: He had a night like last night the night before. I can't prove it, and I need to see what I can do to find all the camera equipment that got packed in pieces in different boxes so that I can.
I'm sore, I'm pissed and I am still thinking the Epidiolex is too high. But it's curious thing, being in an IND, there is no set doseage, only a best guess, that's what we are here to do; help them determine dosing guidelines. Everyone agrees that he is more aware and more present, we just need to get to a stable baseline. For the record, he has NEVER had a stable baseline. Just when we have a new baseline, he adapts or grows and BAM, new baseline.
So while, playing with a new medication isn't surprising, I'm still bummed as hell and need to buy christmas presents. Which, is its own special kind of glorious misery.