Saturday, March 17, 2012

One More Thing. . . . .

Juliana's PT had been urging us to get a scan of Juliana's spine.  No one had noticed a significant curve, but since scoliosis is par for the course with Rett Syndrome, she wanted to get a baseline in order to track in the future.  So we began to process of trying to get in with Scottish Rite, since of course, they are the leaders for this type of thing.  It took awhile, but we finally got in.  Great news, right.  Wrong. . . The bad news is that turns out Juliana has a significant "S" curve as well as a "C" curve.  It's weird how we never noticed it before and now it's all I see.  I see it in the way she stands and even when she sits.  How did we miss this.  And then, to add insult to injury, we were told by the doctor there that there is NOTHING we can do to make it better or slow it down from getting worse.  I had done some research before we went and I knew there wasn't anything really to fix it, but I had read that certain exercises and stretches could definitely slow it down.  I shared this with him and asked what those exercises might be, to which he responded, "You have other children and other things in your life that require your time. Don't waste your time on this.  It's not going to make a difference.  It's just not worth it."  I'm sorry, my daughter is not worth it???? Needless to say we will be finding another doctor.  I don't blame him, he is merely not caught up to date on the research and the amazing things happening.  Maybe Juliana can walk into his office again one day and explain it to him.

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