In June 2003 Emma feel while trying to walk, the next day she was diagnosed with pseudoarthrosis of the tibia, the local doctor told us we were looking at years of surgeries and amputation by time she was 8. Well we started seeing a specialist 2 hours away. She had healing and we were going to go into a KAFO after the next 6 weeks, this was a really bad cast experience with it taking 6 of us to hold a 2 year old down, so when we went back the leg was broke again. So we did the first surgery, they did rodding, iliad crest bone graft and BMP.
She started in a brace in jan, and the end of Jan the rod had slipped and we planned on redoing surgery, that weekend she was walking across the hardwood floor came down on her leg and broke the femur, the surgery got moved up and luckily she only had to spend a week in the spica cast.
So begining of Feb they did the same surgery as before but they pinned the rod in place. The next several years had healing, bone growth, several minor tweeks, like pin pulled out and the fibula pin pulled out. My only real regret during this time is we stopped her from being a kid and doing stuff with other kids.
Then in June 2007 (June is a BAD month in our house), Emma had a buckle fracture, (only her 2nd actual fracture) Emma was also diagnosed with multiple brain tumors from the NF, In Feb she started chemo, in the next 3 years all focus was on the brain tumor but we came to realize that it is only a leg and she could live with out it.
Last Nov the bone had moved to the point that the rod was sticking out of the bone so they replaced the rods with flexible ones, the bowing, pain...really went down hill alot in the past year and this summer we started seriously talking amputation,she was in severe pain and taking a wheel chair to school/the grocery story anywhere we went. we had brought it up seveal times to our doctor, but we had to get everyone on board and pick the right time with Emmas health.,
We are taking a break from chemo and amputated a few weeks ago, the leg cracked like an egg shell under the doctors thumb in surgery, but our doctor said we absolutley did the right thing.
In the begining of our journey with the leg we always said we wouldn't amputate until Emma could help make that choice and she did. My only regret in our whole journey is we spent way to much time keeping Emma from breaking her leg that she never has really been a kid, we never took her sledding, she hasn't done a lot of things that most kids her age have.
Written by A. B. 19.10.10