Grace for Rett » Grace's Life with Rett Syndrome

Grace’s new lycra bodysuit

Two days ago, Grace got her lycra bodysuit delivered. She needs to wear it under her clothes 12 hours a day, every day. It’s extremely specialised with support panels and zippers and holes in all the right places.

The purpose of the suit is to give her muscles the extra support they need to sit up straight. Also, because we reckon she has a hard time judging where her body is in space (imagine feeling like a floating head), the tightness of the suit gives her brain neurological feedback to tell her where her body is. She will have to burn less energy doing simple things like supporting her own body so we anticipate she will have more energy and be less sleepy.

She loves her suit! She smiles massively when I pick her up after squeezing her into it and she sits so strong and tall without the massive effort she used to have to put into sitting.

Emma Boyes - June 1, 2012 - 8:43 am

Wow this is great I haven’t heard of these Lycra suits….fantastic idea and so great that she loves it and it works. It must be so hard for the girls to understand where there are ‘in space’. Holly does really struggle some days, although she does sit, she does loose her balance often and gets very panicked.
Grace looks so well too, she is such a pretty girl. x

Robin - June 1, 2012 - 3:17 pm

what a neat thing to support her muscles – she looks great and so big sitting up!

Janie Beaumont - June 1, 2012 - 5:36 pm

This is really really great…….it never would of occured to me that it would help her to have more energy, but of course……

Olive gets really tired & sleepy these days…….I have really high hopes for this suit, please keep us updated on how effective you feel it is for Grace. Grace is looking really really well & gorgeous by the way…….x

Bambi - June 4, 2012 - 5:30 pm

I’m so glad this is working for you. I haven’t heard about these body suits. I would imagine they work some what like weighted blankets or vests?
And yes, Grace looks great. Such a pretty girl!

Scott L Vannatter - June 29, 2012 - 2:32 pm

I have heard of Rett’s, but thank you for the information as I knew very little of it. I would say how sorry I am, but it looks like Grace has a very loving Mother and Father and that is most important.

I was reading SusieLandau’s latest post and saw your profile. It led me to this and, after reading, I know why. God gives us little bumps, I believe when we are going through changes to help us move forward.

I thank you for that nudge. I use my blog similarly to yours. If you get a chance, stop by. The early posts talk more of God and of my survival.

Have a great day,
Scott

A Poem by Elijah » Grace for Rett - August 14, 2012 - 7:59 pm

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