Wednesday, October 31, 2007

And we're UP UP UP!!!


Happy Birthday Little Miss Katie down under in Australia!!!
Today Daniel went to see Dr. Chugani (his neurologist) for his first appointment since being off ACTH. And wahoooooooo, (have I mentioned before I LOVE going to see Dr. Chugani, he makes me walk away feeling that my child is just a typical child) he says Daniel is just doing great, and that we are going to start to wean him off of the Zonegran medication that he is one for seizures. Which will leave Daniel still on the Vigabatrin (anti-seizure meds) and the Robinul (for drooling, caused by the PMG).
This is a good thing, weaning the meds, but I will be honest with you. I AM SO NERVOUS!! Daniel was originally one just one anti seizure medicine for 1 1/2 yrs (vigabatrin) and it controlled the IS seizures. Then for whatever reason they came back and we added the Zonegran. This didnt' stop the seizures and that is when we decided that we'd do the ACTH (successful!). So because his EEG came back clear and the Zonegran didn't really do anything in the first place Dr. Chugani said to start Daniel on the wean. Which we will start to do this weekend and then he will be completely off that by the end of November. IT IS SO NERVEWRAKING! and I am so torn. Yes I want him off the med, no I don't want to mess with anything because he is seizure free right now! Why mess with a good thing?!?!?!
Then in 3 months we go back and we'll get another EEG. And if it comes back clean again, we will begin weaning the Vigabatrin. The thought of this itself gives me a horrible stomach ache! NO antiseizure medicine at all!?!?! ARE THEY NUTS!?!?! But hey Dr. Chugani hasn't steered me wrong yet.
Today Daddy came along to our therapy sessions and got to see all the wonderful progress Daniel has been making. In fact............Daniel took such pride in Dad being there that he even showed off quite a bit. He did laps in the hallway walking with the posture walker. He is such a show off!! He was so proud of himself. Its Awesome! (there's my favorite word again! I've got to find something else to use pretty soon!)
Pretty soon I'll just break out into cheer:
"S, O, M,E"


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