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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Walking stronger
Namine impressed us in therapy today.
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State Fair
Namine got to go to the Wisconsin State Fair not once, not twice, but three times.
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Bee party
How many birthday parties is this kid gonna get? :D
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Family picnic
The most important part about our family picnic is inclusion.
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Results from the pain clinic
Namine visited the pain clinic, better known as the headache clinic, in a follow-up appointment.
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Hand crank bike
Since the weather has finally started to warm up, we broke Namine’s hand crank bicycle out of the garage.
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Basketball camp, week four
This week’s session of basketball camp was a little more casual, but casual doesn’t mean laid back. Namine still worked very hard.
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Basketball camp, week three
Another week’s basketball camp gives evidence of Namine’s improvement.
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Climbing into the bathtub
Namine has been practicing climbing into the bathtub. It has presented some new challenges, but nothing that a little creativity and determination can’t handle.
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Second fireworks in two days
Namine had more fun at her second fireworks, likely because this one didn’t hurt her chest.
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First official fireworks
Namine loved what we consider her first real Fourth of July fireworks.
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Holter monitor
Remember the Holter monitor? Namine had to wear it for 24 hours.