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.
-
One puff less
Namine had an appointment with her pulmonologist yesterday morning. It was just a routine visit, but even so, we came away with some fantastic news.
-
Look what we found
In cleaning our room yesterday, we found an old saline vial from Namine’s trache days. This brings back some memories.
-
At the dentist
Having Pierre Robin Sequence, Namine sees her dentist at the hospital.
-
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…
-
Keep your chin up!
Thanks to the awesome folks over at Pierre Robin Sequence Foundation for including Namine in one of their promotional images.
-
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.
-
For the better
Some thoughts of a special needs parent.
-
Namine’s glasses
With her new glasses, Namine looks a little (okay, a lot) more grown up than I’m comfortable with.
-
Namine’s first loose tooth
Tonight, while Namine was brushing her teeth, I noticed that she didn’t turn the electric toothbrush on. Not only that, but she was wincing. After she was done, I took the toothbrush to do a once-over like I always do after she’s done. She told me, “Don’t brush my teeth, Daddy! My teeth hurt!”
-
Tomorrow will be better
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…
-
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.
-
Speech appointment
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.