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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Always a hope
A child’s insight sees much. Tonight, Namine taught me an important lesson.
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Preparing for the dance recital
We went to the dance studio where Namine takes ballet and jazz early. There was a meeting on the upcoming recital, and we didn’t want to miss it.
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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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Ortho clinic
We met with Namine’s orthopedic surgeon to discuss possible surgery.
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In dance class
I can’t help but think, Why couldn’t her school have been like this?
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One less med
Last week Namine had a cardiology appointment. It was just a routine check up.
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One Christmas wish
Namine asked for one thing in particular: her very own kitchen.
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Dancing her heart out
Near the end of dance this week, the teacher introduced the class to a new game called “Pass the Mike.”
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Dancing by herself
Last night’s dance class saw Namine doing more on her own.
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Independence: a recap
Namine prides herself on her independence, as any child does.
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Baseball
Namine loved her first baseball practice!
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Al’s Run shirts
I picked up Team Namine’s shirts for Al’s Run this afternoon.