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.
-
Dental checkup
Sometimes an uneventful appointment is preferable.
-
Leg pain scare
Namine’s leg was caught in the sliding door of the van. Fortunately, nothing is broken.
-
Covid booster
Namine was finally able to get her third Covid shot.
-
Teaching herself to swim
Namine taught herself to swim at Disney World.
-
Freshman year orientation
Who told our daughter she could grow up?
-
CHD awareness week
Let’s talk about CHD awareness.
-
New orthopedic doctor
We met Namine’s new ortho doctor today.
-
Eye checkup
It looks like Namine needs glasses again.
-
Virtual speech at the medical college
Jessica, Namine, and I were asked to speak once again to the Medical College of Wisconsin about equipment, accessibility, and patient support.
-
Road trip to radiology
We had to go to the hospital to X-ray Namine’s leg.
-
Mindfulness and medication
Sometimes we need help remembering the “why,” and that’s okay.
-
Namine’s second Covid vaccine
Namine has gotten her second COVID-19 vaccination shot. It did not go as smoothly this time.