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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Visit to the ER
Yesterday Namine told us that she thought her leg might be broken, so we took her to the ER. (The X-rays came back negative.)
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Needing new AFOs
We’re rethinking a decision made by Namine’s foot doctor.
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Parade
Namine was in her very first parade!
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Cardiology appointment
Namine’s heart continues to do well post-Fontan.
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New wheelchair ordered!
I am happy to announce that Namine’s new wheelchair has been ordered!
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Accessible sandbox
At my family picnic, Namine got to play in a wheelchair-accessible sandbox.
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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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Grocery shopping
While on a trip to the store, Namine got a boost of self-confidence.
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Small basketball group
It was just Namine, her coach, and one other kid at basketball practice this morning.
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Happy birthday Namine!
Namine turned nine! I can still hardly believe it.
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Almost rained out
It was raining when Jessica and Namine arrived at the YMCA this evening, but fortunately the weather cleared up enough before the game started.
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Throwback Thursday: Namine’s ramp
I was browsing some of Namine’s old videos when I came across her old ramp.