We were at the hospital today, getting a hip X-ray for Mikaere… it’s something we’ve done every year, knowing that kids with NKH are at risk of hip sublaxation and dysplasia because they don’t weight bear like neurotypical kids. It’s a thing, especially as NKH kids get older. It can cause significant amounts of pain and discomfort when things aren’t in the right spot, and when you’re nonverbal and can’t tell people when you’re in pain – as his Mama I worry.
Also, our guy isn’t a little babe anymore – he’s not easily portable and I can’t just pick him up to move him around. We had to wait at this appointment for the radiologists to get their mobile hoist, and then there was a moment when they realised the X-ray table doesn’t have gaps under for the wheels on the hoist to fit, so only part of the table was accessible… we made it work but it was only possible because he’s a child, and you can kind of tug the sling under him to reposition… but if had been an adult, it wouldn’t have worked (or rather, not in a dignified or safe way. I’m endlessly infuriated at the lack of accessibility and how designers just don’t think about non-ambulatory people). As far as appointments go it was a chill one, but as Mikaere grows I worry about all the things he has to face in a world that’s wildly inaccessible.
Anyway. Hip X-ray. It happened! Now we wait to hear from ortho and hope for a 👍
#nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #glycineencephalopathy #cureNeeded #complexmedicalneeds #fundraising #teamMikaere #hipsublaxation #hipdysplasia
