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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Attending a second school
Namine is attending a new school! She’s also still attending the RVA.
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Tooth extraction recovery, again
Namine is feeling much better after having her teeth pulled, so we spent the day taking down the Christmas decorations.
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Tooth extraction, again
Namine had the remaining two teeth pulled so she can get braces.
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Back to basketball
Namine hasn’t been to basketball practice in a while, due in part to holiday craziness and in part to medical things like getting her teeth pulled. She was happy to return.
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Nutcracker
Better late than never, we got to see the Nutcracker!
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Christmas piano recital
Namine played three songs in this year’s Christmastime piano recital.
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Third annual American Girl trip
This is our third year taking our girls to American Girl to start off our Christmas Celebration.
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Ortho appointment
Namine has been given a clean bill of health by her orthopedic surgeon.
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Setting up the Christmas tree
We’ve gotten the Christmas tree all set up!
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Virtual schooling
The Milwaukee Journal Sentinel published an article about Namine attending a virtual school.
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Thanksgiving education
Namine was happy to explain to her cousins how her legs are different.
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Tour de Force Fall recital
The Fall season of Tour de Force ballet has come to an end. Namine has had a wonderful time, and she loved performing in the end of season recital.