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.
We’re headed off to the hospital tomorrow, for more procedures. Namine is having two things done: dental work and a bronchoscopy.
Every once in a while, Namine will say something that we don’t understand. Some time ago, one such word was “appawooby.” We could not, for the longest time, figure out what it meant. We eventually figured it out: it meant “that would be.” She was saying an approximation of when we say it quickly, “tha’wou’be.” Since then, every once in a while Jessica or I will use it. Makes perfect sense to us.
Yesterday we had a clinic visit with Namine’s ENT doctor, Dr. Sulman. The meeting’s purpose was to talk about the clipping Namine’s frenulum (the webbing under her tongue), since she’s tongue-tied. I think the meeting went rather well.
Next week Monday is the first meeting (of many, I fear) to discuss the clipping of Namine’s frenulum (that webbing underneath the tongue). This meeting is solely between us (Jessica and myself) and Namine’s primary ENT doctor. The Special Needs coordinating nurse is still working on getting a meeting involving every doctor set up.
We knew that we would be getting a follow-up call after Namine’s cleft palate clinic appointments. It was expected, if only because we’d already done the same thing six months ago. What we didn’t expect was the utter stupidity accompanying the call.