Monday, July 6, 2015


A lot of the challenges of PWS are related to food. Limits on what she can eat and to some extent, how much. Remembering to drink liquids, not using artificial sweeteners or sugar, being mindful when away from home.

This is only one variable in the equation however. Exercise has never really been a problem for Ayden Jane. She and I did lots of things together that often included walking dogs, riding bikes to the playground, taking a walk on the beach, even heading to Walmart and wandering the store can be turned into extra steps and exercise.

This summer, we started with being sick. Then traveled a bit and now she would just rather hang out with her friends. "Playing" seemed like exercise to Ayden Jane so getting her out to do something else was getting to be a problem. I thought through it, emailed Dr. Miller to see if I was crazy and decided it was time to explain to Ayden Jane that playing and exercise are different things. Both are good, but they are not equal. It used to be that exercise was a given so adjusting food was all that was needed for weight maintenance. She has been getting frustrated that she has been good about food and her 'number' is not where she wants it.

I told Ayden Jane that because of PWS she needs to exercise everyday. That just playing around in the pool, swinging on the swings with her friends, painting and coloring, even catching bugs is not the exercise she needs.

She was upset at first but soon into the conversation I realized her concern was less about the exercise and more about making sure she was not missing out on anything. So we just figured out how she can have it all. Basically, we backed up breakfast a little and we are walking/running 1 1/2 miles every morning. She knows there is no heading to neighbors before 9:00 and no neighbor kids allowed at our door before then so as long as we are sure to be done by then Ayden Jane is in.

Today was day 3 and Ayden Jane is getting more and more happy with the whole plan. Whew. The timing was good because her replacement fitbit just came and she loves that she starts her day with nearly 5000 steps. I can say she has lost a LOT of stamina over the past month. I'm excited that her goal is to get back to the point where she can run the full mile and a half. Sounds like a perfect goal to me.

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