As part of her genetic uniqueness, Avery had pervasive weakness in her core. There’s a name for it which escapes me right now. How wonderful is it that I can’t even remember some of her physical ailments because it’s been so long since they’ve resolved? The medical knowledge packed into my brain remains only as long as it’s necessary. Once the issue is no longer relevant, the dosages, protocols, scary science stuff, etc. fades away, presumably to make room for new, current information.
Anyway, in addition to her low muscle tone aka hypotonia (I didn’t suddenly remember the term. I cheated and looked in her medical file) she also had weakness in her legs and ankles. Standing without support was impossible.
Hypotonia is a persistent condition relating to the amount of tension or resistance to the stretch in a muscle. Those affected must compensate by developing overall muscle strength. After years of intensive physical therapy, which we called “Super Fun Gym Class” or “Baby Pilates”, Avery was able to stand. Then with the aid of leg braces, she was able to take her first steps.
Her first orthotic devices went up to her knees. They were clunky and ugly and hot but she wore them every day, all day, without complaint. After a few years, she graduated to braces that only went up mid-calf. And then wore Ankle-Foot orthotics (AFOs), which were later shaved down to thin inserts that slid fully inside her shoes, barely noticeable at all.
Now with eight years of strength training under her tiny belt, at her last physio session she was allowed to throw her well-used AFOs into the trash. She’s finally footloose and AFO free! This was a big moment. She was so happy she literally jumped up and down. And because Avery has worked so hard, she can, jump up and down.
