Thursday, 17 April 2014

Matching accessories

I posted previously here and here about scoliosis in Rett Syndrome. For approximately a year, Jessica has been wearing her Lycra body suit to try to stop her scoliosis deteriorating. Jess was reviewed and re-x-rayed in December, and while her scoliosis is not significantly worse, it was decided to move Jess into a rigid body brace. This is because we were having some problems with the Lycra body suit causing damage to her skin. We were also given the very depressing statistic that 60% of girls who present as Jess does now will need major corrective spinal surgery by the time they are 10 years old. Given that the body suit was causing problems, and that she was always going to end up in the rigid brace at some point, it seemed the sensible thing to do.

So in January, I took Jess to be cast for her brace and I was asked to choose from a selection of designs. I narrowed down the choices, and gave Jess 3 or 4 to choose from. She VERY clearly chose one. Now, it wasn't the one I would necessarily have chosen for her (so I guess it is just as well I asked her, and didn't just decide for her!) and I kept double checking with her that I had understood her correctly. But yes, and it was some of the clearest communication I have seen from Jessica in a long time.  We now have the brace, and have to gradually increase the time that Jessica wears it every day. However, this has turned out to be a very slow process, as Jessica has been so ill since December.

However, this last month Jessica also needed new leg splints (ankle-foot orthotics) and again I took her to be cast for these. And again, I gave Jess a choice of designs- and she chose exactly the same design as she did for her rigid brace, while giggling hilariously! She clearly knew exactly what she was doing, and she now has matching accessories. Every girl should have matching accessories, even if they are slightly unconventional ones!!


  1. That is a very smart brace, and a bright and cheerful colour. I think Jess made a great choice. Chris x

  2. I think she has style. It is retro/vintage cool mum!

    1. Very stylish. Great taste! I would like wellies in that flowery pattern!

    2. She could start a trend!

  3. Amy chose hers too - but in the same way that I always offered choices to her sister, ie between 2/3 things that were equally acceptable to me!! Brace and AFOs are different though - she's not quite so naturally coordinated...


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