Well obviously it is not day 144 and we are not stranded on a deserted island, but it sure feels like we are in the middle of no where and have been here for a long time. We are actually on day 12 and still no seizures. Today was a weird day for him. He was very irratible and moody. Although he was difficult to deal with, I'm very excited because we have noticed on days he is crabby the next day is typically a seizure. LET'S HOPE THAT IS THE CASE!!!! I don't know how much longer we will be able to handle this. Jayen has given up on his walks again. He cries and hits the enitre time he is walking and we usually have to stop after 2 or 3 rounds instead of the 10 we were previously getting. Spirits are dwindling fast. I think one seizure would help us all feel a little closer to this finish line.
I'm trying to also keep in the back of my mind that this is all still just another hurdle to get to the resection surgery. If they can't pinpoint where the seizures originate or it is located near critical functions then the resection will be unlikely. We still have many hurdles ahead of us. But as I told a friend today, We are blessed to have Jayen in our lives. If this is the price we have to pay, then it is worth it!
No comments:
Post a Comment