Femoral Facial Syndrome
Femoral Facial Syndrome is a rare disorder characterized by underdeveloped thigh bones (femurs) and unusual facial characteristics. It presents with a very broad range and variety of symptoms. Namine’s diagnosis of this disorder includes her Caudal Regression Syndrome, Pierre Robin Sequence, and Double Inlet Left Ventricle Heart Defect.
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Accessibility at Bong Recreation Area
For Namine’s birthday, we went camping. I wrote about the trip, but now I want to talk about the cabin’s accessibility.
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Apartment accessibility
Even if you live in an apartment, you can still improve accessibility. Sometimes you just need to improvise.
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Tennis
Namine was very excited to play tennis outside.
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Bowling
Namine showed us that she didn’t need the rack to bowl anymore.
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Baseball game
There weren’t as many kids that showed up for this week’s baseball game, but they still had fun.
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First game of the season
Namine started a new season of baseball.
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Orthopedic clinic
Namine met with her orthopedic surgeon for her six-month checkup. Good news all around.
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Piano recital
Namine played in her Spring piano recital.
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Cleft palate clinic
Namine saw several doctors in a morning-long cleft palate clinic appointment.
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Basketball with the new wheelchair
Namine got to take her brand new, custom-built wheelchair for a spin at basketball practice.
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Tour de Force recital
Namine and the rest of her dance class performed in their very own recital.
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New baseball season
A new season of baseball has started!