Maria’s breathing started getting noticeably better on Sunday the 25th. She hasn’t needed the extra medication (Albuterol) much this week. Cathy’s been letting Manolis give it to her mostly to give him a chance to practice with the inhaler on the medicine that’s not important rather than the daily stuff.
However Maria never lets us relax. Today she has had at least three short seizures and several more maybes. It’s been months since she last had one and even though we know they will come back now and then it’s frustrating to see them return. What’s really heartbreaking is that she gets so down when she has them. She obviously hates them as much as or more than we do.
I took her to hippotherapy and she was still pretty cranky and withdrawn. However the instant the helmet went on, she relaxed and got a big grin. She had fun on the horse although she was very stiff and uncooperative. After the ride she refused to walk for the PT. She just doesn’t want to walk or stand lately. At first it was being sick and now it may just be that she’s out of the habit. We still put her in the stander and she even seems to enjoy it but she just hangs in the walker and won’t do anything.
After hippotherapy she usually goes down for a nap but didn’t today, the day she had her augcom evaluation. Then as soon the augcom meeting started she started to fade. Within a half hour or less she was dead asleep. The augcom people talked to us about the different devices available, asked about Maria’s abilities and motivations, and tried to get a good picture of what devices to focus on. Her regular speech and occupational therapists were there plus me, Sue, Manolis and Cathy so they had plenty of information to work with. We were all pretty impressed by the Vmax and it has a tremendous number of features. It’s actually a computer running Windows rather than a canned device so that it is incredibly versatile. They also showed us the Tango! (the therapists all seem impressed by but I thought it was all wrong for her) and the Tech/Talk (much less expensive but much less functionality).
They are going to come back Monday to see if they can catch Maria in a better mood. Cathy is going to keep her home from school, let her sleep late, etc. so they can interact with her and see which devices she works with the best.