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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News from the eye clinic
Namine had an appointment at the eye clinic. We came away with some excellent news.
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Dental appointment
Namine had an appointment in the dental clinic. We have some hard decisions ahead of us.
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Tough questions, hard answers
Namine is asking more difficult questions about her own disabilities.
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Self-sufficiency
Namine wants to be independent, so we’ve done some things to enable her around the house.
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Frenectomy follow-up
Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.
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Headaches
Namine has been complaining of headaches for over a month now, so last Friday we called the hospital to have her seen. While there is a headache clinic at the hospital, Namine’s doctor wanted to see her himself before just sending her off to the clinic.
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Keep your chin up
September 5 is Pierre Robin Sequence (PRS) Awareness Day!
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Home again
We made it home safely from the hospital. Namine is doing well, and in no pain.
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Frenulectomy complete
Namine is in recovery now, and she’s doing well. Her airway looks good, and we expect her to wake up soon.
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Bronchoscopy
Namine has a bronchoscopy and possible partial frenulotomy.
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On needing a trach
A friend of ours had a new baby recently. Namine has been enamored with her.
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ENT appointment
On Thursday of this past week, Namine had an appointment with her ENT doctor. In it were discussed routine things — like bronchoscopies — and scary, new things — like frenulotomies.