Friday, May 3, 2019

PWS Awareness Month Top Ten - Part 1

May is Prader-Willi Awareness month. I struggle a lot with this. On one hand, PWS is a crazy exhausting, syndrome to manage which seems more like wrestling a constant moving target with no way to know what "joy" is coming our way next; and on the other hand, Ayden Jane is pulling of quirky typical kid to most people.  I get frustrated at the chronic nature of the genetic syndrome and wish Ayden Jane could spend her days with her biggest worry being if the waves are good.

When Ayden Jane was diagnosed 10 years ago we were given the sage advice of the day. Otherwise known as the list of all the things Ayden Jane would never be able to do and the ways she would struggle/suffer.

I think this year for PWS Awareness Month I will make a sort of top 10 list of things that were predicted and nearly guaranteed and where we are with them now.

Number 1 - Scoliosis

I don't say number one as in this is the number one challenge, I am just putting it out there first because the wonderful horse barn that has loved on Ayden Jane since she was an 18 pound 18 month old riding a sweet little horse all the way until now!

Scoliosis is very common in PWS. Absolutely not a guarantee, but definitely something that has to be monitored and addressed as needed. For Ayden Jane a 24 degree curve seemed to pop out of no where when she was approaching 5 years old. We were given a few months to see what we could do with PT etc and the appointment was made to consider serial casting. Lots of PT and swimming and hippo-therapy and running and.... her curve gradually reduced until it was just minimally monitored.

Fast forward to this March. Poof. Curve jumped up again and we started night bracing and we are ramping up the running etc. It is extremely uncommon for a curve to be reduced at this age and the goal is simply to keep it from increasing and avoid surgery. Of course, Ayden Jane says don't worry she will have it back under 20 by the time we head back for our next check in September. That's how she rolls!!

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