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.
-
A wild ride
Namine likes to push the little shopping carts they have in grocery stores. They can be a little uncontrollable sometimes, though. (Sounds kind of like a ten year old I know.)
-
Yelling at police
We went to the mall and encountered some accessibility ignorance.
-
New bed frame
Even since we got Namine a new bed four years ago, we left it on the floor. Well, not anymore: now it has a frame.
-
StoneFire Pizza
Namine and her friends from ballet class spent the afternoon at StoneFire Pizza.
-
Dance studios and disability
Ellen Stumbo (whose blog you should be reading anyway, she’s excellent) writes about her negative experience in attempting to enroll her daughter who has Down Syndrome in dance class. (As usual, I have plenty to say on the topic too.)
-
To serve tennis
Namine learned to serve in her tennis lesson, and then played (and won) a match against her coach. (Ten points to the Hogwarts house of your choice if you got the reference.)
-
AFO lift sizes
A little bit about Namine’s leg braces. The more you know
-
Cardiology appointment
We met with Namine’s cardiologist to discuss some concerns.
-
Tour de Force kickoff
The kickoff event for the Milwaukee Ballet’s Tour de Force program was today. Namine and her friends from the Glissade class performed their dance again.
-
Moving in tennis
Namine has started to learn moving and hitting the ball in her adaptive tennis class.
-
Oral surgery
Namine finally had the last tooth pulled, removing the final roadblock to getting her complete braces.
-
Raise the Roof
Namine performed with her classmates at a fundraising event for the Milwaukee Ballet.