Day 1 is the visit with the neurologist and research/study team to go over the past 6 months history. Then we do the EMG nerve study test. We were prepared to have Maya sedated with versed, but she does so horrible with the side effects that we attempted to go through the EMG without any sedation this time. Maya got through it like a champ! We had a little crying/whining, but no tears! The EMG uses a tool that zaps you and that is what is thought to be painful. No, not our Maya. She didn't think anything of the shock, rather she didn't like the tape they used to put on the wires. Go figure. The child life coordinator kept her busy with bubbles and she had her DVD player. 15 minutes later, test was done and no horrible side effects from versed. Yippee!!! Totally deserved of a new toy, Maya! So the results showed that Maya is stable since the last visit. She did not have any (real) increase or decrease in her nerve activity. While they like to see the upward trend, the team was happy to see she didn't go down in her scores (She is 1.0 on the MUNE scale and was a 1.1 last time). Maya's growth chart shows she is 25% for height and between 10-25% for weight (estimated at 15%). They didn't get a chance to evaluate her diet that morning, but we will hear about that later this week. Like Charlie and I always say, the numbers are just the numbers. We can see that Maya has more strength than she did a year and a half ago. That is all we need.
Day 2 was Maya’s physical therapy assessment. We usually meet with Donata, but I guess she is semi-retired now and we now have Janine. They do the same test on Maya every time to mark her progress. Last time Maya took forever to roll over both ways but this time she did it in half the time! It still takes her a little bit to get it going but at least we can say that she can do it. They measure the degree of curvature of her knees and she has about a 5 degree knee contracture. They said we are doing everything we can – stander time, knee brace at night, stretches – but correcting that 5 degrees is pretty hard. I hate that it will get worse over time once she starts using a power chair. I wish there was something else we could do to avoid her knees from getting stiff. These are just the nasty side effects from not being able to stand or walk L The visit was actually way quicker than we expected. Donata usually tries new things with Maya as you can see from the previous posts. We didn’t do anything but the assessment this time and were in and out in about 30 minutes. I asked more about a back brace and what Maya could benefit from, but that is also a catch 22. She needs it when she sits, but if you use it too much, she could stop using those muscles and lose that function. Or if you don’t use it enough, she could slouch too much and develop scoliosis earlier. There’s just no good answer to all this bracing. Charlie and I find the back bracing to be the toughest to cope with. Probably because its hard to even change her diaper with it on (which also makes potty training tough!), or that her clothes with the brace have to be one size bigger than without the brace. If you ever wonder why she has so many clothes it’s because we have to keep two sizes of everything – with and without the back bracing. Maya really isn’t a big fan of it either so that makes it even tougher to put it on her. We keep reminding ourselves that it is for the best. Anyway, back to this visit, we didn’t find out the scores yet, but I hope to post it when we do. We still didn’t get her scores from the 3rd visit last April so hopefully we will get both this time.
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