We stayed in the hospital from the 22-25. He was put on phenobarbital and seemed to be seizure free. Two days later we noticed a funny movement he was making. Again I started second guessing myself. I talked to the doctors and tried explaining what he was doing. I was told a few times that he was just getting startled. It was a normal thing for a child his age to be doing. I knew they were wrong. I sat down with him one day with the video camera on. I was trying to get a video to send to the doctor. In the first few seconds of taping the dog barked and scared Jayen. You could see his reaction when he was startled. Not more than a minute later he had one of those "funny movements". I GOT IT! I GOT IT! I GOT IT! I was so excited. I finally had proof of what was happening. I sent that video to almost everyone. I wanted people to know that I wasn't crazy. Something was really wrong with my baby. This was the beginning of the end.
I say that not in a bad way. I recently read when a nurse was training in the hospital she was trained that when a family is given a catastrophic diagnosis like this, that the parents have to go through a grieving process. They have to grieve the end of a perfect child. All the dreams and hopes that they had are now obscured with the possibility of things that are far worse. Not that the child can't be perfect, but the hopes and dreams of before are now shared with the what ifs and will he ever.
