·  Normal is a dryer setting.


Speaking a new way

On Thursday I took Namine to the speech pathologist at Children’s. He wanted to see and hear Namine speak with the prosthetic and without it. I had not put the prosthetic in because it makes Namine throw up. So we went without it, I still had it in my purse. Namine did her talking into…

Improving speech

Namine had speech and physical therapy today. She has her good days and bad days, as anyone does, and today was a particularly good day.

Familiarity breeds…

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.

Excitement and improvement

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.

A new record

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…

Speaking with the prosthetic

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…

Getting used to the palatal prosthetic

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.

The palatal lift prosthesis is a mouthful

I mentioned yesterday that the last big thing is to reschedule Namine’s palate prosthetic fitting. She had the measuring before the Fontan, and had to postpone the fitting due to all the complications involved with Namine’s chest incision from that surgery. But not only did they finally return our calls, they wanted to do it…

Omega loops

Sounds like something out of a sci fi movie, doesn’t it? It’s not. It’s what Namine had placed in her mouth today, in preparation for her new prosthetic.