My little Sarah weighs heavily on my mind today. We visited the orthopedic this morning and found her scoliosis has increased. It's gone from a 38 degree curvature to 48 degree in the last five or six months. It wasn't the news I was hoping for today. They consider surgery at 50 degrees. That scares me to death; the last thing she needs to go through is surgery. We've been told to have her wear her brace 20 hours everyday!
So, on our ride back to Sarah's school I asked her about wearing her brace everyday to school. I just love her response. She's amazing! "I show my Lizabeth, Anna, and Kaitlyn my butterflies?! My teachie like it!" Not the way I felt inside, but my attitude sure changed quickly. She marched in the school with me and began announcing to everyone, not just the office ladies, that she gets to wear her butterflies everyday!
For those of you that haven't seen her brace it has butterflies on it. It's not the most comfortable thing and it takes all sorts of bribes to even get her to keep it on. Of course, she's taught herself how to unstrap it by herself which I don't think any other child her age could ever figure out.
Each time we revamp a new therapy or a new strategy with Sarah I always go through these same feelings. It's always Sarah that pulls me out with her positive attitude and then it turns into routine and just a part of our life. I'm sure she'll be just fine! She always is!
It's very normal on a day like this to recommit myself to everything involved with Prader-Willi Syndrome, so here I go again. I've been on the computer reserving seats for conferences and sending out brochures and here I am posting a brochure to the Utah Prader-Willi Walk. It's awesome! We used to help plan and put on the event, but now we're trying to participate from afar. If you'd like, take a look. Remember this walk will still benefit Sarah in a huge way. The money earned will still send me and Justin to National PWS Conference, State PWS Conference, and get us new therapy supplies that we need.http://www.upwsa.org/downloads/upwsa_walk_2008_brochure.pdf I know they are in huge need of silent auction items and prizes to give away.
Happy Reading! If anything you'll learn all about Prader-Willi Syndrome. Any questions, just let me know!
3 comments:
Sarah is such a special child--but you knew that already. And, you are a special family to have her placed in your care. I hope you know that!
I feel for you. She is so amazing and resilient. What a bright little spirit! Trav could probably donate a free estate plan for the silent auction, and I bet I could put together a set of 10-15 cute homemade cards..... I don't know if you would be interested, but let me know!
Oh Megan! I've been looking through your blog tonight (yes it is way past my bedtime). My heart aches a little reading about Justin being gone and commuting! It is a rough time, commuting that is. I would have to remind myself that is was hard for Jeff too. I would get caught up into myself being stressed out and would forget about how bad he had it too. Anyway, you are great to remember him :) Remember, there are other pilot wifes in the ward. Call me anytime for anything.
Good luck with Sarah! She is a great girl!
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