A very important part of getting ready for such a big surgery is hearing the stories of those whose footsteps we follow. I have a hundred questions, and a bit of skepticism. Given that the research I originally had done on rotationplasty indicated that many children experienced de-rotation, I knew I needed to hear those stories and the success stories. Maybe I needed to hear the success stories more.
I am grateful to be part of a wonderful FB community for PFFD that has offered me great support, advice, and amazing friendship. In there I can participate in discussions and debates about surgical options, doctors and hospitals, first steps, prosthetics, and all the fears and joys that come with being a parent of a child with this disability. Not all PFFD patients are the same and in so many ways it is like many other physical disabilities: PT, braces, crutches, walkers, answering questions from strangers, the tears and worries... Yet, there are many elements of PFFD that are unique. I mean, how often do you get a phone call that a concerned bus driver saw your son's leg move in a way it shouldn't but he was completely unhurt?
It is through this wonderful group that I have gotten to meet a handful of other PFFD families at an annual picnic. There are older children and adults with PFFD who have shared advice and confidence and inspiration. One such woman had rotationplasty as a child without success. Why would I then even consider it for my son? She graciously shared her story and some details of the different surgeries she has had.
It is my understanding that the specifics of the rotationplasty that my son will undergo is different and improved from the procedure performed in decades past. So, I needed to talk to a parent whose child has had the "new and improved" rotationplasty. Along comes Jen.
Last night, I was blessed to be able to talk to Jen about her daughter's surgery 7 years ago. Jen is a kindred spirit, from her feelings of being blessed to not know about PFFD prior to birth to the fact that she felt God guided her to rotationplasty though it wasn't in their original plan. Jen said if she had known then just how well her daughter would be doing now she would never have doubted anything. These were just the words this nervous mother needed to hear.
I got to ask about recovering from the surgery, how long her daughter needed PT, any complications, car seats with the spica cast, and playing soccer. We discussed why we loved Dr. Standard, our journeys to rotationplasty, and how cute 5 year olds are. We plan to meet this spring, and they will even be in Baltimore while we are there.
What a blessing Jen and her family are. I am so grateful that Henry will get to meet someone who has already done what he is about to begin, who can show him that a backward foot is a good thing. I am grateful for Jen, who so graciously shared her wisdom from experience and who, more than anyone else I know, can relate to me in all this right now.
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