Pierre Robin Sequence
Pierre Robin (pronounced “Roban”) Sequence or Syndrome (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.
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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.
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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…
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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.
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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.
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The palatal lift prosthesis is a mouthful
Namine has finally gotten her new palatal prosthetic.
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Communication issues
In which Namine mispronounces a word.
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Raising awareness for Pierre Robin Sequence
It’s been a while since I talked about anything other than staying in the hospital. We’ve been pretty busy, especially with the complications that have arisen from Namine’s heart surgery and all that entails.
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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.
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Breathing easier
Namine had a pulmonology appointment the other day. She came away with good news: she can now start to be weaned off her inhalers.
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Procedures tomorrow
We’re headed off to the hospital tomorrow, for more procedures. Namine is having two things done: dental work and a bronchoscopy.
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Gribbles
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.”…
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A language all our own
When Namine was little, she had to have a trach. It was what allowed her to survive, before she was big enough to withstand the jaw distraction and cleft palate repair surgeries. Even then, it took some time before she was able to be rid of the trach. During that time, we – all three…