• Ali Isaac

A Carys Update: Febuary 2018 Is This the End of AFO’s?

Updated: Feb 1, 2020

I haven’t posted about Carys for a long time, not because there was nothing to tell, but because progress has been a long slow plod of repetitiveness and, I know it sounds awful, but yes, monotony; not particularly interesting to read, and achievements which might seem minor and trivial to the outsider, although spectacular to us.

However, this meant she was unable to walk naturally, and in effect, made it harder for her to learn to walk. She started wearing them when she was just three years old… she’s now twelve, and  despite the added obstacles, learn to walk she did!

Then last month she started refusing to walk, and started crying and trying to sit down as soon as I strapped her AFO’s on. I was worried, as she only had them a few months, so I left them off and arranged to have them checked. It turns out that a recent growth spurt meant she had outgrown them already. Whilst we waited for a fitting appointment, Carys demonstrated how strong and sturdy she is without them, and how much better she could walk in her normal shoes.

Carys An Update February 2018 Is This the End of AFO's?

No AFO’s! Regular shoes! I never expected this… I had been led to believe Carys would need AFO’s all her life. But don’t get too excited. There is a down side… isn’t there always?

There is a chance that Carys’s muscles could tighten, and her pronation worsen, which could lead to hip and knee problems in the future. So to counter this, she will have to wear leg braces at night, but not a regular set, oh no… she will need knee braces too, so that she can’t bend her legs, because if she sleeps with her legs bent at the knee it will counteract the stretch she needs to her calf muscles.

How do most people sleep? Curled into the foetal position. How does Carys often sleep? On her belly with her knees tucked up under her and her bum in the air, just like a baby. Hmmm… I foresee some sleepless nights ahead, for her and for me! We are very lucky that Carys is a good sleeper, and she loves her bed. I hope this continues once she adjusts. If it doesn’t work out, she will have to go back to regular day braces, and I really don’t want that to happen.

#kneebraces #CFC #legbraces #raresyndrome #specialneeds #AFos #learningtowalk #walking #nonmobile #physiotherapy #disabled #geneticdisorder #lifewithaspecialneedschild #CardiofaciocutaneousSyndrome #Carys

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