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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That new car accessibility
Our new car enables Namine to be a little more independent.
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Dribbling practice
Namine’s hard work in basketball practice is starting to pay off.
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Fenestration follow-up
Namine’s fenestration might not be closed after all.
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Basketball
Namine’s first day back to basketball in the new year went quite well.
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Twist Car in therapy
Namine brought her new bike to therapy.
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Christmas Eve
We had a great time celebrating Christmas Eve at my parents’ house.
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Decorating for Christmas
Namine had an impromptu piano recital for her great grandpa. When we came home, we put up the tree.
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Post-Thanksgiving desk
I promise I didn’t just type random words in the title. Really.
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Thankful for Anita’s Dance Center
It’s easy to take what we have for granted. As we approach Thanksgiving, I want to draw special attention to the dance studio where Namine takes ballet, jazz, and tap lessons.
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Tap class, now with shoes
Namine was more than a little excited for tonight’s class, and for one reason: she has new tap shoes.
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New tap shoes
Namine’s new tap shoes have arrived, and she tried them on today.
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Learning to dribble
Namine is learning a new skill in basketball: dribbling.