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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Tour de Force
Namine attended her first week of ballet with Tour de Force.
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Informed decisions
There was a discussion on one of the Facebook groups I belong to on how and when to educate one’s child on surgery. I responded there with a simplified version of what follows, but I have more to say (as I usually do).
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Heart monitor
Namine saw her cardiologist for a heart checkup.
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Presentation at Marquette
Jessica, Namine, and I gave another talk to the bioengineering class at Marquette University.
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Tour de Force kickoff
Namine had a great time at the Milwaukee Ballet Tour de Force kickoff party.
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Last day of tennis
Despite Namine’s hurt wrist, she had a great time at the last tennis practice.
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Old walker in therapy
Namine has switched back to using her old walker.
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Sport wheelchair meeting
We met with the Marquette students building Namine’s wheelchair. Namine had a lot of fun.
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Hand crank bike fitting
Namine has outgrown her hand-crank bike, so we’ve started looking at new ones.
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New walker
Namine’s new walker has finally arrived!
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Tennis, again
Namine went back to tennis practice (not that there was any question of that happening) and loved it more than ever.
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Tennis
Namine tried playing tennis for the first time, and she loved it.