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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Wheelchair cushion decision
Namine has reached a decision about her wheelchair cushions, but it wasn’t an easy one.
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Farewell, Dr. Black
Namine had her final appointment with her bone specialist and foot surgeon.
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Final flower girl dress fitting
Namine’s dress for my sister’s wedding is finally complete.
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Wheelchair cushion delivery
We had a delivery of several new wheelchair cushions.
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New wheelchair
Namine got her new wheelchair, for real this time!
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Scoliosis checkup
The latest checkup for Namine’s scoliosis means good news for the holidays.
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Wheelchair measuring
Once more, with feeling.
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Heart visit and liver ultrasound
Namine had a cardiology appointment followed by a liver ultrasound.
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Therapy changes
Namine’s therapy hours have been reduced, but this time it’s not a bad thing.
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Good bye braces, hello retainer
After a shorter timeline than expected, Namine’s braces have been removed!
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Good bye, floor sink
We have gotten rid of Namine’s sink outside the bathroom.
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Halloween party
We headed up to my sister-in-law’s house for a Halloween party and trick or treating! 🎃