Wednesday, October 21, 2015

Success


I feel I can say with some confidence that Damonito's corpus callosotomy was successful. The purpose of the surgery was to reduce the number of seizures and lessen the severity of the ones he does have. We can call it a success because both of those things have happened.
He's not by any means seizure free.
Damonito is still not able to go to school. Just too risky right now. If he gets over-heated or over-stimulated he'll have a seizure. He's happy hanging out at home watching Elmo. The other thing is he's still pretty wobbly when he stands and someone has to be with him all the time.
When I was over the other day, he was watching Elmo and some elephants came on the screen and he turned and said, "elllllll!" It seemed clear he was trying to say "elephant." It's exciting to think he has a new word. He's doing great with words, we weren't sure what he'd remember after his surgery but he seems to have retained more than we anticipated. He definitely remembers that Elmo is his buddy.

Tuesday, October 6, 2015

Socks the Puppet



Damonito loves Sesame Street. He loves Cookie Monster and the Count (he even mimics the Count, uh..uh..uh...) but he especially loves Elmo. He loves to put socks on his hands and play puppet. Seizures in kids with Dravet can happen because of over excitement, over exertion and stress. Socks the Puppet is a nice, calm activity Damonito can experience without fear of having a seizure.
Plus, he loves it. Anything to get a smile.