Saturday 9 May 2015

Humatrope 3: Foundation, More Brace

The chronicle of making a Prader-Willi syndrome Used-Medical-Waste Collar:

The foundation, ready for Words of Love
The collar foundation is completely ready to be covered with the "Words of Love" embroidery that will hold it all together: the thread snippets and evaporated alcohol swabs are neatly sandwiched between two layers of Heat-Away Solvy, and firmly held in place by many rows of diagonal basting. It waits beside my sewing machine, everything ready: darning foot attached, heavy needle inserted, tension adjusted. I'm very eager to start the stitching. When the rhythm is right, freehand embroidery is a blissful, mindless, meditation - and a lot of fun to do. I'm itching to get my jammies on, heat up my lava seat, select the right music (Beatles? Mojo Stones?), and get to it!

However, I don't know quite what to write, or even what colour to make the embroidery. "Words of Love" could be so many things: do I write about her? Do I write to her? Do I use her words? Do I transcribe the article I've already written about the as-yet unfinished piece? A little more percolation, and the answer will come, but until it does, must. resist. urge. to sew! Mildly annoying.

While doing the diagonal basting last night, it occurred to me that making a tutorial might give me a little time to side-ways think the wording issue. Diagonal basting is a very useful stitch - the very best for preventing shifting while machining. I use it all the time. Sewing geeks can find the diagonal basting tutorial here.

There's a reason we gave up wearing corsets 
What else have I done instead? Other than a large, much-needed, grocery run, much of my time has been spent trying to break my daughter into her new scoliosis back brace, without completely losing heart - hers, or mine. It's not going well; the novelty of the 101 Dalmatians print wore off within minutes. It is uncomfortable: it presses on her hips, digs into her left armpit, restricts her movement. She is worried what kids will think. She is wobbly: her thigh muscles are shortened from her usual posture, so, when corrected by the brace, she tips forward. Panties must be worn on top of it, or they get trapped. Tears, frustration, anger, sadness, worry. Plus heartbreak.

The brace is an attempt to prevent surgery, but maybe there's another, more experimental way. Heard from another PWS mother of some sort of stretchy, tight suit used in Europe. Will check the Internet, and ask at her next orthopaedic surgeon's appointment. In the meantime, it helped tonight that she was at a neighbour's house, instead of ours. They managed to keep her in it for 4 hours - twice my record. Still, it might be quite a time before the 23hr/day expectation is realized...

The Great Pumpkin made a collar from Halloween wrappers and some velvet scraps - the candy got chucked
She approaches the inconveniences of her condition with affable poise: nightly injections are a non-issue; endless specialist appointments are anticipated like play dates; stim tests are good for a digestive cookie; X-rays bring stickers; tutoring is a social occasion. Because of her wacky metabolism, at Halloween she can choose two goodies; the rest go to the Great Pumpkin in exchange for a gift. She gets one candy cane at Christmas, a small cupcake with the icing scraped off at birthdays. One each vanilla and chocolate Girl Guide cookie per year. She doesn't complain about any of these things, but she is complaining about the brace. "I'm not crying wolf," she shouts at me. "I really hate it!" Maybe that's what I'll embroider...

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