Dear Journal, the seizures are back

 Cully's Blog goes silent as the excitement dies down and we progress forward to boost his skills and work on his communication. The lack of drama does not mean we forget about the struggles we were facing in those few months when everything was out of control and we were shaking and scared. That immediate feeling of panic went away with every day that passed without those horrible seizures and we turned our focus to the Autism and finding a way to make that almost non existent. But every day that I heard my name called out or one of the boys would tell me "Mom needs you" I would repeat inside my head "no-no-don't let it be bad..." as I sprinted up the stairs or into the house.

  Today it happened... And the seizures are back.

  For months we have had false alarms and tend to think every small movement could be a seizure but we have been so lucky up to this point.  When Cully went into a fog and would not react to his mothers voice she sent Doug for me. When I walked into the office and sat next to him it took only seconds for his head to drop and his tell tale wiggling fingers to follow. With hopes that we might still be seeing something that was not really there we talked with him and watched him closely. When he came to sit on my lap, pushed up into me, took my hand and pulled it around him.... I knew for certain it was starting all over again...  Cully did this the first time he had his seizures last summer and it became our thing..

  I realize that this blog is as much of a journal for me as it is a way to keep people informed on Cully. If this blog had an audience of only me I would write in it just as I am today. In fact I was fairly certain I was the only subscriber for many months but I was surprised to learn how many people would come to ask me why I have not been writing lately.  So, if this blog at any time begins to sound like a drama film off  the Hallmark  Channel then so be it....trust me, this is how I talk to myself in my head too.

  Cully was scheduled for an EEG on Tuesday morning with his team at Detroit Children's Hospital. This was his landmark EEG to begin his ween off of this nasty medication called Vigabatrin. Perhaps not such a positive event now but I sure wish today was Tuesday.

  The trouble with IS (Infantile Spasms) is the damage the seizures do to the brain. How serious are the seizures? Serious enough that when his diagnosis was made and presented to the neurological team, we were contacted while in Niagara Falls and told to return home immediately and begin his treatment...  And we did. I imagine that we know much less than many of the other families that have been going through this but this is what I have come to understand. And with that said it feels like we should be at Detroit Children's right now. Like every minute makes the difference, though I know that there is nothing that can be done.

  So the roller coaster ride begins again and the emotions build here in our home as we hope to stop these seizures.