Friday, June 9, 2017

A few people have asked me this week how Ayden Jane is doing. It's a simple enough question but if I am to answer truthfully and completely, it's a long answer. So, here goes.

Energy wise, Ayden Jane is doing GREAT. She is up around 6:30 or so and goes strong all day long. At times it seems like she has too much energy. She will go from playing in the ocean for hours to swimming in the pool for a bit. You would think that would make her tired, or at least calm. I think she is just really enjoying the feeling of energy. That probably sounds weird, but until this summer, she would go pretty well, but we would have to watch for crashes in energy. It always was an effort for her to keep up. She was determined and did not want to miss anything so she would hang in there, but she just goes with ease now. Of course, she is also talking non stop and super fast so it would be nice if she came with an off switch.

I told her the other day that I was going to hide her Pitolisant because I can't keep up. She grinned and told that wouldn't work because she is too smart for me now. I'd say she is enjoying the added energy.

There are other areas we are watching for improvement. One is tone. Ayden Jane is low tone, but not too low. Lots of kids with PWS have significantly low tone. I think Ayden Jane's tone has improved by watching her sit. She used to sort of melt into the sofa and you could see her posture fall apart. Now she looks more typical. She stands up better without leaning into me and she can get going easier. When your tone is low, you sort of need to tell all your muscles to turn on, gather strength and then move. Every time... The muscles turn of the moment you are done actively using them so you have to round 'em up every time. I can see Ayden Jane get going much more quickly now, she can hop out of the chair, change direction, and generally just react more typically.

A great things is that Ayden Jane just feels good. She is happy. She is relaxed about food, now trusting her body that she can hold it together if supper is late or a snack is missed. I think she was more fearful of feeling bad because she ran out of fuel than she was actually hungry (before Pitolisant). This made knowing when and what food was coming always lurk in the back of her mind. She is freed from that now. I asked her the other day if she was okay or we needed to get a snack. It was the first she seemed sort of spacey in a long time. She looked at me like I was crazy, said she was fine, and ran and jumped in the pool.

There's more, but that's all I can think of now.

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