This blog is about our son Michael Jesse and his battle with Lennox Gastaut Syndrome. He is 3 1/2 and was diagnosed at 18 months. We will write about Michael's journey, things we try and all of the celebrations and blessings in his life. April 15, 2010 was his first day without a seizure.
Childhood epileptic encephalopathy (Lennox-Gastaut syndrome [LGS]) is a rare and debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications or therapies, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.
Wednesday, July 7, 2010
Clapping and a wave!
We've been doing "If you're happy and you know it" for a while and Michael will clap your hands but not his own. This past week he's transitioning to clapping his own hands (and sometimes will clap when you tell him "clap, clap, clap". Very cool and you can tell he is proud of his accomplishment. While these are very small steps, they are huge for us as it shows he is able to follow instruction and repeat the action. We all take this stuff for granted but your mind it doing a lot when you do stuff as simple as clapping. Also, Michael waved good-bye to Ms. Denise and Connor yesterday. Of course we all over did it, but it warms our hearts that our friends and our kids friends are rooting for Michael just as much as we are. I think he has only done that once or twice before on "cue". Again, very cool stuff. I have to say it again, bit by bit he is getting better!
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