One of things that happens as Mikaere gets older is the scarcity of *things* that he needs. Things that were wildly available when he was wee babe don’t exist in big kid sizes. Like bibs, bibs that are *waterproof* and don’t leak through to his shirt (I’m looking at you, M&S adaptive bibs).
I got fed up. Usually I’m all for paying for convenience, but it actually has to be convenient. The ones we need are so expensive, or ugly or the shipping was horrendous or there weren’t that many options available etc etc. So I pulled out the sewing machine, ordered some fabric and off I went.
I am not a seamstress. The last time I properly sewed anything that wasn’t clothing for a bear (a one-off project for Kai’s class), was high school. I don’t how the right techniques to finish a bib, but you know what? My kid has at least one bib, that’s the right size, that keeps his chest dry 🙌🙌🙌🙌
I attempted to make button buddies too (a small fabric button that goes around his gastrostomy to keep it dry, so it doesn’t granulate. They’re also stupidly expensive and we keep losing them to the same monster that steals our socks).
And then I figured out why button buddies are so expensive, and it’s because they’re a bitch to make. And I made the mistake of lining them with micro fleece (if the purposes of the button buddy is to soak up the liquid coming up from the stoma, then using water proof fabric is a terrible idea). BUT – I gave it a go, my third one was better than my first, and I’m going to scavenge from the rubbish M&S bibs to make the fourth, so you know. I’ll get there. I’ll not be defeated by a stupid button buddy.
So this is where I am, parenting wise. I’ve entered the sewing stage out of desperation. Wish me luck!
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
