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.
-
Eye appointment
Namine got her eyes dilated for a vision test.
-
Dental appointment
We received some unexpected news at Namine’s brace tightening.
-
Video doctor appointment
Namine had her first virtual checkup.
-
Braces tightening
A routine tightening of Namine’s braces brought with it the opportunity to choose a new color!
-
Much Ado About Nothing
Namine played three roles in her school’s production of a 30 Minute Shakespeare play.
-
Choir recital
Namine was in her first choir recital!
-
New braces color
Namine got to choose a new color for her braces! 😬
-
Speech at the medical college
Jessica, Namine, and I were asked back to the Medical College of Wisconsin to give our talk on accessibility. ♿
-
Al’s Run
We ran, walked, and wheeled in Briggs & Al’s Run in support of Children’s Hospital of Wisconsin!
-
Tightening braces
Namine’s mouth is a little sore, but otherwise her dentist appointment went fine.
-
Team Up For Fun Camp
For four days, Namine attended an accessible camp designed for children with disabilities. ♿
-
Overnight hospital stay
After a late night visit to the ER, Namine was admitted to the hospital for a persistent cough, high fever, and low oxygenation.