Originally Posted by aart
Pretty amazing! Congrats!
What are the 'cables'(?) going from hip to calf?
They don't appear to be weight bearing?
They aren't. They are to keep her legs straight. Her hips are getting so much better, but the bones in her lower legs have been twisted since birth. In the beginning, she wore double casts on both legs. They went from hip to toes. The first layer was plaster, the second fiberglass. That's why we can look back at her pictures now and know exactly where she was in the casting process - each time she got new casts in the series, we chose different colors for the fiberglass. So we know how old she was when the striped ones went on, the purple ones, etc.
She has AFOs (ankle/foot orthotics) going from mid-calf to her toes, inside her shoes. Riveted to them are the torsion cables, the KFOs (knee/foot orthotics) jointed at the knee and the hip,and attached to a leather belt around her waist. They won't "cure" anything. They just keep her feet under her in the correct line to allow her to walk. Without them her feet - especially the left one - turn inwards terribly. When she tries to walk without the braces, she trips over her own feet. The left foot can literally face totally backwards when she's just standing relaxed. Since she has no nerves or feeling in her feet, she's totally unaware that they're turned in. She can't feel the floor so she doesn't know where her feet are.
The steel torsion cables are more twisted steel wire inside the cables. She is so much more active than most kids wearing these that she has snapped the steel cables twice, and that tells you how much stress she puts on those cables. Most kids are just walking in them. She climbs into her carseat, onto the furniture, and even climbs into her kitchen chair, then climbs up on the table for her catheterizations. She is tough on them, I'll tell ya! She also likes to turn sommersaults - not an activity those are designed for. <sigh> So although the cables do their jobs well and keep her feet pointed correctly, they have become dangerous. She's now in the strongest ones they make, and these are really starting to bow outward and behind her instead of following the natural line of her legs. Last appointment in Denver they told us we need to have the cables removed from her AFOs totally, so she'll just be walking in AFOS and her shoes. We're more than a little worried about what that's going to do to her confidence, and we already know from past experience before she got her first set of cables that her feet still turn inward with the just the ankle/foot orthotics alone. But besides the danger of high tension wire snapping against her leg (the bruise from the last time was horrific) there is so much torsion that she's ruining her knees completely. So we are at a Catch 22 with her feet and legs at this point.
This walk today was a big deal. A real big deal! And it breaks my heart to know that it could well be the last time she's this fluid walking, unless they can find something else to do the job. But as I've said a million times before, if Kendra never walks another step in her life and stays in her chair, she's still the most special little girl I've ever known, and I love her dearly!
Edited to add: Thanks, guys! I'm so proud of her, and she was loving it....her face says it all!
Edited by Blooie - 4/8/16 at 4:48pm