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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Namine’s new bike
We picked up Namine’s new hand-pedal bike!
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Bowling league
Namine bowled for the first time in a league!
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Measured for a new wheelchair
Namine was measured for a new wheelchair!
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Creation Camp at Zachariah’s Acres
We spent a couple hours up at Zachariah’s Acres. The weather was a little brisk, but we still had fun. ♿
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Bike fitting and measuring
We met with one of the mechanics working on Namine’s new adaptive bike. It’s almost done!
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Al’s Run
We ran, walked, and wheeled in Briggs & Al’s Run in support of Children’s Hospital of Wisconsin!
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Cardiology checkup
Namine had a routine cardiology checkup today. She is doing well, but we learned of a potential future complication.
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Second school orientation
Namine attended her homeschool co-op’s orientation. She met with teachers, auditioned for a play, and more!
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New van
We got a new car! We’re pretty excited about how accessible it is for Namine.
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Zoo a la Carte
We (Grandma and Grandpa) recently had the pleasure of taking Namine to Milwaukee à la Carte at the Zoo, and predictably, she had a great time. Local restaurants set up booths around the zoo where food could be purchased, so that in addition to seeing the animals, we enjoyed some tasty treats.
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State Fair
On the very last day of it being open, we made it to the Wisconsin State Fair!
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Cardiac MRI
A routine heart scan ended up being a pretty major milestone for Namine.