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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Virtual speech at the medical college
Jessica, Namine, and I were asked back to the Medical College of Wisconsin to give our annual talk on equipment and accessibility.
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A windy hay ride
The blustery day didn’t stop us from going on a hay ride.
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Stein’s trick or treat
Trick or treat was a little different this year, but still fun!
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Dental appointments
Namine’s dentist predicts that she will get rid of her braces soon!
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Eye appointment
Namine got her eyes dilated for a vision test.
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Shalom Wildlife Zoo
We took Namine to a different kind of zoo!
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Wheelchair approval
We continue to pursue getting a new wheelchair for Namine.
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New wheelchair fitting
Namine was measured for a new wheelchair. Hopefully it takes less than a year for the finished product this time.
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New wheelchair, almost
We started the day expecting a new wheelchair, but now Namine doesn’t have one at all until next week.
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Tennis growth
We received the slightly shocking news that Namine has outgrown her tennis racket.
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Moving in tennis
It was a beautiful day for doubles in tennis.
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Back to tennis
Namine enjoyed returning to tennis practice!