I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:
A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?
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.
We had an appointment today with the speech pathologist. (Yes, that one.) It went far better than I expected. In fact, we now have solid evidence that not only is Namine speaking better with the palatal prosthetic in, her speech is improved when she isn’t wearing it.
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.