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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Accessibility speech
Jessica, Namine, and I gave a talk at Children’s Hospital of Wisconsin on accessibility. ♿
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Upcoming dental work
Namine had an orthodontist appointment, but this was no ordinary visit. Today we discussed the upcoming dental work she will need.
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Cleft palate clinic
Namine saw several doctors in a morning-long cleft palate clinic appointment.
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Informed decisions
There was a discussion on one of the Facebook groups I belong to on how and when to educate one’s child on surgery. I responded there with a simplified version of what follows, but I have more to say (as I usually do).
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Presentation at Marquette
Jessica, Namine, and I gave another talk to the bioengineering class at Marquette University.
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Doc block
We had to go to the hospital so the pharmacy could refill Namine’s medication.
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Presentation at the medical college
Jessica, Namine, and I were invited to speak at the Children’s Hospital of Wisconsin college.
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Flashback Friday: Namine’s “broken things” song
A few years ago, Namine made up a song and sang it for us.
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Pulmonary appointment
Namine met with her pulmonary doctor. We were met with unexpected good news.
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Farewell, Dr. Denny
Namine’s yearly appointment with her cranial-facial doctor was bittersweet; he’s retiring, so today we said goodbye.
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The good and bad of labels
The dark underbelly of the special needs community is the dislike of the label of “special needs” itself. That, combined with the fact that many able-bodied people are writing and speaking for disabled people (both by professionals and caregivers), can be a recipe for disaster.
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Obamacare saved my daughter
Losing the Affordable Care Act would be devastating. Without it, my daughter would most likely be dead.