Use It or Lose It

I am really not sure what is going on with Ayden Jane but I do think there is an element of 'use it or lose it' with her. We have just finished a great, relaxing Christmas break with zero therapy. Yep. ZERO. It was too cold so horses was cancelled 2 weeks prior to the holidays and then we had the 2 weeks over the holidays off. A month off the horse. Our PT always takes the 2 weeks over Christmas off to be with her own sweet ones. I even allowed myself to not really do our own home therapy. Ayden Jane looked awesome right about Christmas and I just got a bit lazy.

Around New Year's weekend I noticed AJ's posture looked poor. Her belly started sticking out again, she began hyper extending her knees again, W sit came back with a vengeance... Not that these sorts of spurts are entirely unprecedented, but it was such a huge swing.

I knew Jen was on her way to save the day today. She took one look and agreed her belly is/was completely turned off. It is like the tone just shuts down even though the muscles are all still there. I still don't get it. grrrr. Anyway, when Jen came through the door the first question from Ayden Jane was, "did you bring mr. potato?" (okay, I know that is irrelevant but hang with me.) The next thing Ayden Jane said was, "you bring more tape for my legs?" She hasn't had her legs taped in at least a month, but she asked for it, got the blanket to lay on (just like we did it the first time) and hopped down on her belly. She was hilarious after the legs were taped just watching how she loved the feel of her legs/body with its new support. By the end of the hour her belly looked a bit better. Then she was wild woman for the rest of the night, climbing everything and getting LOUDER by the hour. She went to bed easier and happier than she had been in days... It was like she had regained control of her body and was 'centered'.

So, after 3 days back at school, returning to horses, speech therapy and PT, AJ is more energetic. It really is like activity and energy breed activity and energy for her. I am guessing it has more to do with neurology than anything else. She has made amazing neurologic connections for a kid with PWS. This is shown in the fact that, most of the time, her tone is good, her motor planning is great, her balance it good, she is doing great in the speech area, she is not delayed cognitively, ... I guess, somehow, those pathways just need constant activation or they are still prone to 'turn off.' Maybe someday she will get beyond this, but for now, there is no more getting lazy!

I am definitely going to have to enroll AJ in some activities as she gets older. I think either swimming or gymnastics are my best bet. I am a bit biased toward swimming due to cost and proximity, but not sure I can find much for a 3 yr old. I guess to the gym I go to see if there is anything that will work for her and our budget.