Friday, August 1, 2008
Reagan had two different appointments today both of which were more or less pointless. This morning I got up at the crack of dawn to take her to the orthotic place (where we got her AFOs). We were supposed to go in to pick up her wrist hand orthosis (WHOs-which keep her hands open and unfisted)...I say supposed to because they didn't have them! They already called and canceled our original appt and rescheduled it for 2 weeks later (6 weeks total since she first got fitted for these things)...and they still weren't there!!!!!! I was very angry. Especially since Reagan screamed and cried half the way there and then continued to carry on and make a scene in the waiting room. While we were there I asked them about my concern that her AFOs seem to be tighter on her and they think I'm just not putting them on her correctly. I don't know what to tell them. I do the best I can and even when her very experienced PT stretches her out and puts them on she has the same big giant red marks! I don't know. Then this afternoon we had to drive back into Houston for a follow-up with her neurologist. This guy is not her primary neurologist, he doesn't specialize in epilepsy like our new guy does, but he was someone we took her to because we weren't happy with our original neurologist. So he's basically just a second opinion guy...although a very bright and experienced neurologist in his own right. I just filled him in on everything that's been going on since he last saw her in March (which is a TON), but that was about it. I am going to send him copies of her 2 MRIs to go over just to see what he thinks. He agreed with our current course of action and that was that. Pretty pointless. Oh well. Our PT did come by today and look at Reagan in her stander and she approves. She thinks it will do the trick...get her up and weight bearing...so I'm going to try to get her in it ~30min a day to start out. She's still having a lot of seizures today, hopefully she's just adjusting to the increase and this won't continue. Poor thing. I really hate seizures! Please keep her in your prayers!