When we received Sofie's file to review back in September of 2009, there was little information regarding her special need. She was diagnosed with a limb difference (right limbs shorter than left, missing digits) and there were some photos and measurements, but not much else. We of course had her medical information reviewed by a pediatrician who specializes in reviewing international adoption files but again, there was not much for her to look at. We knew that her condition was not one that fell in to the "minor, correctable" category and honestly, we were totally comfortable with it all. We knew in our hearts she was our daughter.
Sofie's pediatrician referred us to Shriners Hospital for Children in Sacramento and we are very fortunate to have been accepted to the orthopedic program there. After several hours of x-rays and consultations on Tuesday, we have some definitive answers.
First let me say what a trooper Sofie was. She was so anxious about this experience but let the doctors do what they needed to and of course charmed the socks off of everyone. And I can't say enough about how professional and compassionate and
human the staff at Shriners are. It is a very special place.
Sofie has what is called Fibular Deficiency (she is missing her fibular bone), which is what we suspected. The good news is her arm has all the bones and she does not appear to have any syndromes associated with this condition. The doctors were amazed at how well she functions...amazed. The head ortho doctor commented that "she must not have read the manual". We also discovered that one of Sofie's fingers on her right hand only has the phalanges and is sort of "floating". But again, they were very impressed with how well she uses the hand and there is really no recommended treatment.
We were given some basic information about treatment options for Sofie's leg and will go back in February to meet with the head of orthopedics to further discuss them. The concern is that the length of her leg inequality will increase as she grows, which could lead to scoliosis and hip problems.
We do have the option of doing nothing now and waiting to see what happens as she grows. Anyone who has met her will tell you that this limb difference in no way slows her down. See video below. As a matter of fact, most people we meet don't even notice there is something special about her. She can run, jump, climb and play just like other kids her age. And seriously, who can make it past this face...?
Video:
http://www.flickr.com/photos/sofieyan/5040660486/
