She was diagnosed at 8 months when she first started to walk along things, all of a sudden she quit. My husband had mentioned to the doctor before he thought her leg seemed bowed and the doctor said it would straighten out. Of course I thought my baby was perfect in every way and didn't think it looked bowed. So a trip to the doctor for Ayden was the beginning of the roller coaster.
The doctor decided to x-ray her leg to see if their was anything to be conserned with.This was the ONE appointment I did not take one of my kids to (because I thought it was just spraigned if anything.) Soon after Jason got her to the doctor he called me at work and said he thought I probably needed to come and started saying words like Pseudoarthrosis and its not looking good. Ayden's leg was severly bowed but had not fractured at this point. Of course I am freaking out thinking what do you mean "its not looking good!!! Is this something that could be fatal!!" I had never heard of it before and it was a big scary word. So I left work and cried the whole way to the doctor, by this point he sent her to another doctor in town to immediately have him put a temporary cast/stint on it until we could go see the specialist at Riley Children's hospital in a few days. Of course I immediately started research and was even more scared.
We went to the appointment a few days later and was even more terrified...for one the doctor didn't seem to know much about it and was almost in awe of the x-ray. The doctor then started saying Neurofibromatosis which I had came across when reading about Pseudoarthsosis, I was devistated and didn't know what to feel.
The doctor ordered Ayden's first brace which came up to her knee. We was going to try the bracing for a while. We then got an appointment with Shriners Children's hospital in St. Louis, this was 2 months after her initial appointment. We was met with like a team of 7 people which really had me scared. Ayden's leg was now fractured. It fractured while in the brace and we have no clue when this happened. The doctor and her team initially said prepare to amputate. OMG was my first thought, then numbness. We were not ready to go that route yet and wanted to brace as long as we could. So her 2nd brace was made at this point and went up to her thigh, this was at 10 months.
Ayden learned to walk at 15 months and had appointments every 6 months at which time she was usually ready for a new brace. The x-rays showed the fracture was not healling in two years and was gradually getting worse and starting to affect how she walked and her back. It was time to make a decision because she was soon going to be turning 3 and if we decided to amputate I wanted to do it sooner rather than later. Ayden is a VERY active girl that thinks she needs to keep up with her brothers and the thought of having to wear a brace all her life was something we didn't feel was right for her. All of our family and close friends also agreed that she may have a better quality of life if we amputated now, but in the end it was our decision and they supported us no matter what.
After alot of research, heartache and tears we decided amputation was the best thing we could do for Ayden. The most difficult choice we have ever had to make and my heart breaks for anyone who has to do it. A wise child that was an amputee said "Do it while she is young so she can do whatever she wants as she is growing up" This was coming from a 10 year old and that pretty much did it.
But we were at peace with the decision and scheduled it a month after her 3rd birthday. On August 11th Ayden had her leg amputated below the knee on her right leg. I've never been so scared in my life. Such a sense of relief when it was all over with. It was hard trying to explain it to a 3 year old but we did the best we could. Ayden picked out a beautiful princess pattern that would soon be her new leg.
Ayden got her leg 6 weeks after surgery and absolutely loves it! She wears it from the time she gets up till about 8 at night. She is so proud of the leg and wants to show it off to all the kids. She has had her leg for 2 1/2 weeks now and started walking without the walker maybe 3 days into it. Don't get me wrong she doesn't walk perfect (YET) but she walks the only way she knew how with her brace.
We have no regrets about the decision we made and Ayden is your typical 3 year old girl. We now will just focus on perfecting the walking and finding a cure for NF. Hope Ayden's story helps any family out there going through this...its scary stuff and I don't know what I would do with out the support I have on facebook. But no matter whatever decision is made our kids are all ANGELS. Wouldn't trade mine for the world <3
Written by A.H.W. 19.10.10