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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Dental appointment
Namine had a dental checkup today. The time for her jaw expansion draws ever closer, but not as close as we thought.
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Presentation at Marquette
This afternoon Jessica, Namine, and I gave a presentation to an engineering class at Marquette University.
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On school and support
Every year since Namine was four, we get these memories that show up in our “On This Day” Facebook feed. The memory in question is about us pulling her out of school.
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Pulmonology appointment
Namine had a checkup, and it could not have gone better.
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Eye appointment
Namine had an eye exam today, and it went well.
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Dental appointment
Namine had a dentist appointment today, and it was a doozy.
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Happy retirement, Dr. Gordon
Last night was the retirement party for Dr. Gordon, who has been Namine’s special needs doctor, well, pretty much since birth.
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Super long speech appointment
A long time ago (it sometimes seems to us), long appointments were the norm. I’m not just talking about a mere two or three hours; in the days of Namine’s infancy, it was typical to spend literally six to eight hours at the hospital.
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Hope for the future
In a private special needs group I follow, the question was asked: “In unthinkable circumstances, should hope be offered?” Here are my thoughts.
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Al’s Run shirts
I picked up Team Namine’s shirts for Al’s Run this afternoon.
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Wheelchair-friendly suitcases
The three of us have been on the hunt for a suitcase suitable enough for Namine to carry with her. We found some pretty decent prospects today.
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Reacting to negativity
A question was asked on the Pierre Robin Sequence board: As a parent to a special needs child, do you get offended when people ask “whats wrong” when they see a trach or something out of the norm with your child? how do you react to the question?