marathon and PT updates

Running for Ayden Jane update. The running part is great right now. I am officially on my 'taper' and loving the fact that I am no longer increasing miles. The organizing fund raising part is so new it has been hectic. We have managed to find ourselves as front page news in our local weekly paper. Very kind of them but definitely a surprise to us. Everyone here has been so supportive of us and interested in what we are doing. I know they all have their plates full with their families... but it is amazing to see people take time and offer support. We live in a great community which poured out support in the early days of Ayden Jane's life so it shouldn't surprise me that they are still so supportive, but somehow it does.

Now for little Ayden Jane. I think she is showing signs of needing an increase in her gh dosage. Now for a lot of kids with PWS, weight gain is often part of needing an increase. That is not really the case, so far, with Ayden Jane. I THINK it works like this. Since gh is a large part of the kids being able to develop lean muscle mass, it in turn helps with metabolism and energy. (just like lean muscle mass on anybody helps these things) I am guessing that in most PWS kids the weight gain is more due to lower metabolism and lack of energy so fat mass is put on rapidly even without an increase in calories. Ayden Jane, on the other hand, just does not seem to gain fat mass at this point (due to supplements and paleo diet?) so for her when the lean muscle mass drops she just seems to literally be skin and bone. It affects her most in the shoulders and across the chest. Last January before we had our last increase, Ayden Jane looked 'frail'. I guess that would be the best word for it. It will be interesting when she goes to her endocrinology appointment in the next month to see if I right!

As far as skills, she just gets more and more verbal as the days go by. Tonight she was cracking us up with her funny little sense of humor. First story. Ayden Jane was in her high chair having a bed time snack when I said to her, "I looove Ayden Jane." She answered, "I yuv you." So of course I said, "I looove Ayden Jane." AJ answered, "I yuv Mckenna!" and giggled and giggled... Later it was bed time. I told her lets go and Ayden Jane said, "I go in Noah's bed?" You see where this was going.

Physically, we have been working on hips and hand skills. Ayden Jane likes to sit in "W" sit, especially when she is tired. We are working on strengthening and getting her to sit "criss cross applesauce". As for her hands, she was showing signs of 'tactile defensiveness'. Well, problem solved. AJ is back to touching everything and is learning to use scissors and color. The other thing we have been working on is throwing. She is doing great with it, but when you try to get her to throw at a target she will just grin at you and throw the other way! She is trouble.