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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New baseball season
The YMCA Miracle League season is in full swing (pun intended), and Namine is glad to be back.
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Seating clinic
Our luck with getting Namine a new wheelchair may be turning around.
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Bone spur
Namine has a bone spur in her left foot.
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No more braces
We got the most amazing news in Namine’s orthopedic clinic today.
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Recital weekend
This weekend was Namine’s dance recital, and she had a wonderful time!
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Dress rehearsal
Namine and I had a blast at our dance dress rehearsal!
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When Namine almost lost her foot
Five years ago, Namine had her second club foot repair surgery.
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Last rehearsal
Tonight was our last practice of the father-daughter dance before the dress rehearsal.
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Pulmonary appointment
Namine met with her pulmonary doctor. We were met with unexpected good news.
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Father-daughter dance practice
Namine and I had our first dance practice together.
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Conquering fear
Namine showed me that she won’t let fear rule her.
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Easter egg hunting
We spent Easter at Jessica’s sister’s house so our girls could go egg hunting.