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 recital
The Tour de Force ballet classes gave their performances in front of family and friends. ♿
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Spring training
The new season of Miracle League baseball has started! ♿⚾
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Dental and the ER
Namine got the rest of her braces, but she also had an allergic reaction to her pre-appointment antibiotic.
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Cardiology appointment
Namine saw her heart doctor this afternoon. Everything appears to be fine, pending the heart monitor’s results.
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Heart monitor
Namine has to wear a heart monitor for the next week.
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Easter candy hunt
We attended Muskego’s 46th annual egg hunt! 🥚
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Late night ER visit
When a heart patient tells you something is wrong, you listen.
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Adaptive bike fitting
Namine was measured for a new hand-crank bike!
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This Is How We Roll Fashion Show 2019
Namine had a wonderful time rolling down the runway in her second fashion show!
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My panic attack during a school play
Namine recently had a few roles in her acting school’s adaptation of Romeo & Juliet. She gave me a panic attack, but that’s on me, not her.
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Happy National Walking Day
Today is National Walking Day. As it happens, Namine had physical therapy today, too.
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At the Purple Giraffe
Namine picked out her outfit for her upcoming fashion show!