Tuesday, September 1, 2009
Reagan has been great again today. Such a sweetie. Talking up a storm and just being all around darling. We had a meeting with her new ECI coordinator this morning. It took a while to finally get someone out here but I think it was worth the wait. She seems to be on top of things and hopefully we can get services rolling soon because Reagan has been almost a month now without vision therapy. After that we headed over for her Feldenkrais session. The practitioner works out of her home and lives about 30min away and little Miss Reagan fell asleep only seconds before we got there. All was not lost though, she went ahead and did the session with her sleeping. It allowed her to see another side of Reagan...one that's not always tense and extending. She ended up waking up about 30min into it but then the seizures started up (actually she had some while she was sleeping too). Have I mentioned how much I hate seizures? I went to the pharmacy today to pick up the rest of her Topomax (they never give us the full amount on our first trip) and they already had the Banzel her doctor called in. Not sure when we should start that. I just hate adding a new medication when we're in the process of decreasing another. It makes it impossible to figure out what's really going on (although do we ever really figure out what's going on?). Her doctor wasn't really clear on when we should start it. You know, when I was asking him about weaning her Clobazam he actually asked me how I wanted to do it! Seriously...isn't he the one with the MD? So here we are Reagan's honorary neurologists and I'm still not sure what to do. Frustrating. Please keep her in your prayers as I attempt to come up with a game plan for all of this.