I don’t talk a whole lot about Vivienne’s special need because, well, most days it just doesn’t come up.
She’s an amazing kid – bright, silly, happy. With the sassiest comebacks ever. And physically, despite her skeletal dysplasia and bilateral arm deformity, she’s quite capable. She does pretty much whatever she wants, in her own special way.
But recently her mobility has decreased. She’s growing and her legs are tighter. Her heel doesn’t touch the floor any more, making it increasingly more difficult for her to go up stairs or climb hills.
In the last few years we’ve tried physical therapy and more serial casting, but she has had no increase in flexibility or mobility. Several months ago we went back to our local orthopedic surgeon to see what he might recommend to help her, not just in the short-term, but in the long-term. Watching your newly-turned 8 year old lose mobility is a scary thing.
He recommended more serial casting.
So we contacted well-known, lower limb specialist Dr. Dobbs in St. Louis. We emailed him with pictures and videos of Vivienne walking and heard back from him that very day. He shared his thoughts and said he felt he could help her.
Well, today is the day. Vivienne will be having a pretty significant surgery on both legs and will come home with full-leg casts that will stay on for 6+ weeks. Non-weight bearing.
It’s challenging, some days, to parent well a child with a completely unknown diagnosis and prognosis. We can only manage and treat her symptoms, and only when it seems to be the best choice for her given what we know (or don’t know) at that moment. She is perfectly made, no doubt about that, and we absolutely adore her, just as she is.
So finding someone to trust with those hard questions has been a journey. But we are hopeful. Hopeful that we have found the specialist who will be able to make a difference for our precious girl.
Today he will be cutting through her heel cord and taking functional tendons from one part of her foot to replace non-functioning tendons, in order to give her some mobility where she needs it most.
If you’d like to join us in praying for Vivienne, we’d be so grateful.