It's hard not to worry, to think the second I start celebrating he will have a seizure. But I know I can't live like that. I need to enjoy each moment with Jonah and all of the KB kids.
Thursday, June 26, 2014
Miracles do happen
Jonah went from having multiple seizures everyday to not one seizure in a whole week. That is our miracle. Some days he would only have a handful and other days hundreds. Even having only 7-8 seizure a day was hard on all of us. For Jonah, he would often fall over from a drop seizure and cut his lip or bruise his face. It was vary stressful. We couldn't leave him alone for any amount of time. Between the 3 older kids and us we were constantly following Jonah around to try to keep him safe. Then 3 weeks ago hit. Things went down hill for Jonah fast. He started having way more seizures. He was having them to the point where they couldn't tell when he would come out of one and a new one would start. That's when all the medication was introduced. Still he wouldn't stop seizing. Finally, the Sunday we were in the hospital we got a glimpse of hope. Jonah came back to us for a short while. It was an amazing time to see him interacting with us. After about on hour or so he pretty much went back into his seizing state. Still more med increases and the start of IVIg. Then by Tuesday afternoon we had our Jonah back. He was playing cars, riding around the hospital on big wheels and so much more. He was still having tonic seizures mostly in his sleep which was new to us. Then, that Wednesday night he had his last known seizure. Jonah has been seizure free for 1 week! He has not gone a week completely seizure free in over a year. Praise God!