Sunday, September 13, 2015

I think there's one thing harder than seeing Jonah have seizures every day is watching him have virtually no seizures for 2 days then have seizures creep back in to the point where they are all the time again. 

Monday and Tuesday were amazing days for Jonah. He woke up Monday with no seizures. He wasn't in a fog, he would look around and not stare, he could go on car rides and not and have seizures, no drooling, no falling, no raising his his hands involuntary to name a few. Then, Wednesday came and the seizures started creeping back. Now today, Thursday, he is back to his baseline which is in and out all day. I just don't get why he can have a couple good days like that out of the blue. Their are so many things it could have been. Was it way more activity and less calories?  Maybe delayed response to last weeks IVIG? High ketones? Low ketones? Less sneaking? CBD kicking in? God giving us a glimpse of our Jonah? Who knows. 
This is a pic from one of those good days!

No comments:

Post a Comment