It's been some VERY busy weeks for us! Caroline went for her weekly EEG last friday (8/5) followed by a visit to our Neurologist Dr. Testa ( I really can't stress enough how much I love this woman!) During the EEG I had noticed that she had one of her "moments" has we say around here. So I handed over the DVD and told her to make sure she looks at the last couple of minutes because I knew she had done something. Come to find out what I had been seeing was NOT infantile spasms but another type of seizure coming from the front right of the brain. Dr. Testa decided that we needed to taper down the ACTH pretty quickly as it isn't controlling the seizures any more and she's started Topamax. She's been on it for 1 week exactly and is doing well! She's loosing some of her chunk (although you'd never guess it by the pictures) and she's happier on days when she doesn't get the injections. We've been greeted with a lot more smiles than we've ever seen. PT and OT both came this week. Caroline still hasn't gotten back into the swing of things there. She did eventually warm up to PT and cooperate and she mainly yelled at OT. I'm hoping as we get back on track with those and decrease the steroids she'll start tolerating her therapies again. In other news we've got great new on her stroller. What insurance doesn't cover EI will! We would have been more than happy to pay our share but feel very blessed that they will cover it. We still have a couple of months til we get it but I can't wait!
Here's our happy girl today! I was able to snap a shot of her big smile :oD
