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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Recital practice
With just one more week of practice, Namine’s jazz class is working hard to learn their dance.
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Accessibility and bathrooms
There is much discussion on social media lately about gender identity and bathroom use.
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Super long speech appointment
A long time ago (it sometimes seems to us), long appointments were the norm. I’m not just talking about a mere two or three hours; in the days of Namine’s infancy, it was typical to spend literally six to eight hours at the hospital.
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Dancing unhindered
Namine’s dance class learned the rest of their recital song.
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Namine’s new kitchen
Yesterday my aunt helped us rearrange our kitchen.
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Last basketball
This week was the last wheelchair basketball session of the season. Namine’s leg was still in pain, but not so much so that she didn’t want to go.
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Learning to skate
Last weekend, Namine got to try something new: sled hockey.
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No vacation
We were so looking forward to going to Florida this coming week, but that’s no longer a possibility. Namine has suffered some complications due to her broken leg, and her orthopedic doctor has instructed her not to travel.
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Back to dance
Namine was welcomed — I should say swarmed — by her dance mates on her first day back since breaking her leg. The way they welcomed her, I could tell she was missed.
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Getting the cast off
Namine got her cast off today, but her leg is still broken.
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More like herself
Namine has been moving around more on her own, climbing and scooting as much as she can.
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A night off
Namine stayed home from dance to rest her leg.