I realized something this year that I hadn't thought of before and that is when times are tough, you know what to expect so you are always guarded and when times are good, you are always guarded because you are looking for the things that are familiar. You never get a break. Such is the case for kids with Dravet Syndrome and their families.
Damonito's surgery this summer saved his life. I have no doubt that if he hadn't had the corpus callosotomy he would have spiraled downward and ended up in status. There's a good chance he would not be with us right now. His recovery was hard but he came through it and has been doing much, much better. He seems to be learning, he's more engaged, there has been talk of reducing his medication, and maybe, just maybe everyone could relax.
Except you can never relax when you have a child with Dravet. The full blown grand mals have returned. We will have to do Christmas presents a couple at a time over a period of days. His recovery drugs are being amped up to keep him out of the hospital. The Nevada Santa brought him Elmo slippers. He also got some books. He's good at turning pages and he loves to look at letters and numbers. It's easy to get ahead of yourself when things are going well. For now, we're back to focusing on today.
