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.
-
ENT clinic
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.
-
Monday’s ENT clinic
Next week Monday is the first meeting (of many, I fear) to discuss the clipping of Namine’s frenulum (that webbing underneath the tongue).
-
Rational thought not included
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.
-
A second opinion
A couple weeks ago, Namine had an appointment at the cleft palate clinic. But this was no mere checkup. Six months ago, several doctors, pathologists, and other specialists evaluated Namine for mandibular and tongue surgery. They declared that she should be re-evaluated six months later; this was that re-evaluation.
-
Sick time
Namine and I now apparently have what Jessica had last week. I thought that I had gotten the worst of it, but Namine woke up with a crouping cough this morning. Despite her being sick, though, she nearly always keeps it together and stays cheerful.
-
Cleft palate clinic
I can never remember if I’m supposed to refer to Dr. Denny’s team as the “cleft palate team” or just the “palate team.” I imagine it’s the latter, since the good doctor does all sorts or palate work. But since Namine had a cleft palate, that term just sort of stuck with us. At any…
-
Things fall apart
I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core.
-
In love’s own words
As Namine gets older, she gets ever more independent. But even as she grows, learns, and develops, the little things she says and does remind us that she is our little love. She is God’s gift to us, and we treasure her more each day.
-
Allergy test today
Today Namine had an allergy test at the hospital, but as usual, we got a little more excitement than we bargained for. She threw up at the clinic, so I had to call my mom to bring some spare clothes. (Of course I was stuck at work, otherwise I would have done it myself.)
-
A near miss
Jessica took Namine to the ER this afternoon. She – Namine, I mean, not Jessica – was playing with a pencil in her mouth, despite being told not to. The next thing you know, Namine’s mouth is bleeding. And the cold grip of fear: did Namine puncture her palate?
-
Remember, remember the fifteenth of September
There are no gunpowder, treasons, or plots here. Just a little thing called decannulation. That’s right, kids. A year ago, Namine got rid of her trach, and her entire world changed.
-
The child who never was
I’ve seen quite a bit lately on Twitter about grieving your child’s special needs.