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.
-
Starting tap class
Namine is starting a new class in dance, and she is super excited.
-
Long sleeves and legwarmers
As the cold weather creeps up, we have to bundle up accordingly.
-
Pulmonology appointment
Namine had a checkup, and it could not have gone better.
-
Basketball
Namine has shown improvement in her first week back to basketball.
-
Determined dancer
Namine is working harder than ever in dance.
-
Banished from dance
No, Namine isn’t banished. It’s me. I’m writing this as I sit out in the lobby of Namine’s dance studio.
-
A new year of dance
Despite not having her walker, Namine enjoyed herself immensely in dance class.
-
Al’s Run
Namine and I had a great time running the 8K in Al’s Run!
-
Leg complications
Namine had a doctor’s appointment today, in which we revisited the aftermath of her broken leg.
-
MRI: home again
We’re back home from Namine’s MRI.
-
MRI: now, we wait
We got up super early this morning in order to get to Children’s Hospital for Namine’s MRI.
-
Eye appointment
Namine had an eye exam today, and it went well.