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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Elf musical
Namine and I joined my parents in seeing Elf the Musical. Actually, I think it was stylized as “ELF: The Musical.” 🧝🎵
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Nutcracker
Namine attended the Nutcracker with her friends from ballet class!
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Choir recital
Namine was in her first choir recital!
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Peter Pan
Namine played a Lost Boy in her school’s production of Peter Pan Jr.!
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Christmas party and a movie
Namine attended the Variety Club’s Christmas party!
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Putting up the Christmas tree
Namine helped me assemble the tree!
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New braces color
Namine got to choose a new color for her braces! 😬
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Trick or treating
We fought through the cold and snow for the poorest candy haul yet. We still had fun though! 😲🌨
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Improving bowling aim
Namine has been steadily improving her freehand throws in bowling.
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Trick or treat at Stein’s
Namine dressed as a cat for the Variety trick or treat!
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Speech at the medical college
Jessica, Namine, and I were asked back to the Medical College of Wisconsin to give our talk on accessibility. ♿
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Tour de Force kickoff
A new season of ballet has begun! ♿🩰