I don’t know if this really qualifies as a blog post, as it’s more of just rambling. But I’ve been reading up on Pierre Robin Sequence a bit more lately, in light of Namine’s prosthetic (with which she’s doing superbly well, by the way) as well as the search for comfortable glasses (on which I will write more later).
Contrary to how the saying goes, Namine has nothing close to contempt for her palatal prosthetic. Quite the opposite – she’s willing to put it in, and is doing quite well with the every-other-day plan prescribed by the speech pathologist.
Jessica decided that we should name Namine’s palatal prosthetic. She and Namine settled on “Pat.” I don’t know. My girls are weird sometimes. It’s up to me to establish normalcy in this family. My cross to bear, I guess.
I worked from home today, which allowed me to get up with Namine and let Jessica sleep in. When I gave Namine her breakfast around 9:30, she asked me to first put her palatal prosthetic in. Wait, what? Yes, that’s right. She was so enthusiastic about it that she wanted to eat breakfast while wearing it.
We gave Namine a couple days off from the prosthetic, if only to give her a chance to recuperate from whatever infection she might have. So when Namine wore it today, we didn’t expect her to keep it in for five hours. (For reference, the most she’d tolerated before today was three hours.) And on top of that, to eat with it in – which had given so much trouble – well, I can only say that my daughter amazes me.
They weren’t kidding when they said Namine would gag quite a bit from the palatal prosthetic. She threw up when Jessica put it in yesterday, although the jury is still out on whether she triggered her gag reflex or if she just worked herself up too much.