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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The importance of non-collapsible wheelchairs
Namine’s wheelchair is sturdier than her last one, and it needs to be.
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Ortho appointment
Namine saw her orthopedic surgeon for a checkup.
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Room to spare
I knew we got a large vehicle for a reason.
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Chest pains
Namine was complaining of chest pains this afternoon, so we took her to the ER. Long story short, she’s fine and we don’t know why she was in pain.
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Doc block
We had to go to the hospital so the pharmacy could refill Namine’s medication.
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New wheelchair
This morning, Namine’s new wheelchair was delivered!
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Sports wheelchair and ballet
We had a busy night last night. We met with the Marquette students building Namine’s new sports chair, and then Namine had a screening for the Milwaukee Ballet.
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Basketball drills
Namine was finally able to return to basketball.
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No more broken leg
Namine got some good news from her orthopedic surgeon.
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Presentation at the medical college
Jessica, Namine, and I were invited to speak at the Children’s Hospital of Wisconsin college.
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Still broken
Namine’s leg is still broken, but it’s healing nicely.
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Hi-tops
Namine got new shoes, and they’re nothing like anything she’s ever worn before.