Lauren's Appointment at KCMS

We went to the orthopedic specialist at KCMS today and he said that Lauren has fibular hemimelia. He said it occurs once in about 100,000 births and is not genetic. It can range from having just a toe-nail absent to having the whole limb missing. In Lauren's case, her right thigh bone is shorter than the left, the fibula is under-developed which is causing the tibia to bow (which is why she has the dimple and what feels like a ridge on the front of her lower leg), the ankle issues, and the missing toes (the least of the problems). He is referring us to GR and also mentioned going to Ann Arbor. He wants us to have a hip ultrasound to make sure there isn't hip involvement but suggested that we get that done in GR. He suggested an MRI of the knee (when she's older because it's done under sedation) because sometimes the ligaments and cartilage can be deficient. He said there is a possibility that the bone in the ankle has not calcified yet because of the lag in growth but that it might not be there. He seemed confident that she will walk but said that only time will tell the severity of problems she has from this as far the length difference as she grows, the bowing of the tibia, etc. This was a lot more than we were expecting after being told that the x-ray of the rest of her leg was normal at the hospital. We've been reading a forum about this and for the most part these kids have to wear a brace to strengthen their ankle, lifts on their shoe, and undergo various procedures such as leg lengthening. The doctor today said it was going to be a long haul. But it is encouraging to read on the forum that despite all that these kids still lead active and fairly normal lives. We have our next appointment at KCMS in 6 months and should have something set up with GR soon.