Wednesday, November 9, 2011

Scoliosis update

Unfortunately I have no pictures or video for you today. My scanner on my printer isn't working.

If you have been keeping up or following this blog you will know that with Rett Syndrome(MAN I HATE THOSE TWO WORDS) comes scoliosis and we have been dealing with it since we first noticed it when Abby was 3. Back then she had a slight 15 degree curve and nobody saw any reason to do anything but monitor her.

Come 5 years old she was at 23 degrees and we started PT. In 6 months we got it down to 17 degrees and we were thrilled.

5 months after she started Kindergarten and a new school she was at 34 degrees and they were talking rods the length of her back and a risky surgery. I got advice from a few other Moms and started the search for a massage therapist and a chiropractor. It took 5 months to find someone to take her on and with the help of some friends we were able to put together and pay for a therapy program for her until the end of the year.

Today we took her in for xrays and her curve is between 25-32 degrees depending where on the bend they measure. Not a miracle but definite progress. The doctor ordered her PT at school to be tripled(they wont do it) so we will soon be looking for therapy through the hospital. I wish we could do it through school but I doubt that will happen considering our district has one...yes one physical therapist. He wants us to continue the Chiropractic and the massage although I don't know how we will pay for that one after the end of this year.

And here's the kicker..don't freak out but...we are going to brace her. Studies show bracing doesn't usually work for RettGirls but we have to try anything we can before we let them cut her open and stick metal in her spine.

That's all I have for now. Keep praying and sending good vibes our way. We appreciate it!

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