This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Saturday, April 16, 2011
Nothing new today. Still just waiting for a seizure. Talked to the doctor a little more today. He answered a lot of questions. We really don't have a whole lot of answers until he has a seizure. I do feel that our time here is not totally a waste. We have taken Jayen completely off the depakote and and weaning the klonopin.So we have already simplified his medicines and he doesn't seem as "drugged" as he did before. I think we are going to try to give it a couple more days. PLEASE PLEASE PLEASE help us pray for answers. God has a plan and we are trying to understand it. We are giving it up to him and hope he leads us in the right direction.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment