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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Dental appointment
Namine had a dentist appointment today, and it was a doozy.
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Roller racer
Today in therapy, Namine got to try something new.
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Flashback Friday: baseball
With Namine’s first full season of the YMCA Miracle League baseball coming to a close, I thought was only appropriate to do a #ff post.
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Last baseball game
Tonight was the last Miracle League baseball game.
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Back to baseball
Namine loved being back at baseball.
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Back to basketball
Namine was very happy to return to basketball after two weeks of vacation.
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Swimming with water wings
Tonight was the second time ever that Namine has swam with water wings by herself.
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Happy retirement, Dr. Gordon
Last night was the retirement party for Dr. Gordon, who has been Namine’s special needs doctor, well, pretty much since birth.
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Playing baseball
Namine’s baseball game was last night, instead of Thursday, because of the upcoming holiday.
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Dance recital
After weeks and weeks of practice, it was finally time for Namine’s dance recital this weekend.
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Bike Buddy
This morning we headed out to Independence First, a disability equipment provider. For the next three weeks, we have on loan a combination wheelchair and bicycle. They call it a Bike Buddy.
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Piano and dance
Last night was Namine’s last dance class before her recital. But before that, she had a piano recital.