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Noah's Update

Noah was seen at the Shriner's Hospital in Greenville, SC in November. The doctors there are wonderful, they truly made me feel at ease with the decision to amputate. My husband and I are chosing amputation over lengthening more for the quality of life that we want Noah to have. Leg lengthening is said to be a hard process for any child to endure and the possibility of having to amputate as an end result is high. I understand my son could keep his own leg and look "normal" however Im confident that the sooner we amputate the sooner he can begin living his life as any child would.
We are returning to Shriner's Hospital in March to meet with the genetics team, we offering them to draw blood and run tests to see if there are any links to enhance the research on why PFFD occurs. In March we will also be scheduling Noah's amputation date. We have been encouraged to do it no earlier then August when he will be 12 months old but no later than 15 months old, so that he can begin walking like anyother baby. I'm finally coming to peace with our decision for Noah and Im confident that he will be a healthy, happy, and active young man. I cant wait to see what his bright future holds. Thanks for all the support from the website and I will keep everyone informed on my sons journey. In the mean time all of our children are in my thoughts and prayers!
Happy Holidays to everyone...
The Robbins


So your son has a completely normal hip socket and pelvis?

Are they doing to amputate at the foot and then later remove the knee and shorten OR are they amputating above the knee? Keep in mind that amputations (except at the ankle) typically require revisions every so many years (10-15) depending on activity level and muscle atrophy. Amputation is rarely a single surgery.

I'm not saying amputation is a bad choice, but it was my experience that some doctors only tell part of the story to get parents to decide the way that they think is a best. Maske sure the doctors have laid out the whole treatment plan.

My daughter Emily will be 4 in May and she goes to Shriners in Lexington KY. She was born without her right femur. We choose to do amputation but only of the foot. Her knee is actually at her hip. They done her surgery when she was 15 months old and she got her first leg about two to three months after surgery. She is walking on her own and trying to run. I would not change my decision for anything. And I agree with you, Shriners is the best place around to take your children. They are very compasionate and caring. They have always been staright forward with us since we went to our first visit when our daughter was 2 months old. Keep me up dated on how your son is doing.