Ayden Jane seems "all jumbled" these days. We have lost glasses, papers at school, forgotten homework ... all things that would have typically sent her into a tizzy of panic. Instead, she is just not worried about any of it. It seems we have swung from overly worried about most all details to sort of 'whatever'. I am hoping this is an adjustment period which will eventually swing to a healthy concern.
On my part, I stopped the acetyl carnitine (ACL) after the last increase in Pitolisant. She was operating so fast that neither she, nor the rest of us, could hardly stand it. She was talking super fast, but still not as fast as her brain was going. The result was a lot of half sentences and gaps in what she was saying. She basically needed a translator. So, part of me wonders if now that she is fully adjusted to the Pitolisant, does she need a touch of the ACL? Questions with no clear answer.... It's the challenge of this entire thing.
I will say she was pretty entertaining last night at the soccer fields. She had to survey 50 people for a math project at school. She was a little shy at first so we did the first one together with a friend of mine. Then she went to a few moms and with me just letting them know it was a school assignment, they were glad to help. Ayden Jane was hooked. She asked her question to 50 different people and recorded their responses. No translator needed and she was so excited.
The entire interaction shows the improvement in processing speed. She was able to explain what she was doing and adapt to questions people She could just plain interact back and forth at the speed of typical conversation.
Now, if we can just get the data displayed in 3 different types of graphs... legibly... we will be in good shape.
The other crazy thing is Ayden Jane can throw and catch!! Seriously, she used to try to throw but it was ugly. The ball never really went anywhere, let alone with any speed or accuracy. We threw a ball back and forth on the trampoline the other night and she could absolutely hit a target and throw with decent velocity. Even catching was vastly improved!
On my part, I stopped the acetyl carnitine (ACL) after the last increase in Pitolisant. She was operating so fast that neither she, nor the rest of us, could hardly stand it. She was talking super fast, but still not as fast as her brain was going. The result was a lot of half sentences and gaps in what she was saying. She basically needed a translator. So, part of me wonders if now that she is fully adjusted to the Pitolisant, does she need a touch of the ACL? Questions with no clear answer.... It's the challenge of this entire thing.
I will say she was pretty entertaining last night at the soccer fields. She had to survey 50 people for a math project at school. She was a little shy at first so we did the first one together with a friend of mine. Then she went to a few moms and with me just letting them know it was a school assignment, they were glad to help. Ayden Jane was hooked. She asked her question to 50 different people and recorded their responses. No translator needed and she was so excited.
The entire interaction shows the improvement in processing speed. She was able to explain what she was doing and adapt to questions people She could just plain interact back and forth at the speed of typical conversation.
Now, if we can just get the data displayed in 3 different types of graphs... legibly... we will be in good shape.
The other crazy thing is Ayden Jane can throw and catch!! Seriously, she used to try to throw but it was ugly. The ball never really went anywhere, let alone with any speed or accuracy. We threw a ball back and forth on the trampoline the other night and she could absolutely hit a target and throw with decent velocity. Even catching was vastly improved!
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