I was sitting at my computer working this morning when I received a voicemail from my father in law.
"Catie, this is dad. That show the Dr's is showing that scoliosis surgery if you want to watch. "
Since William's diagnosis our family has been very pro-active about sharing information. We have developed excellent filters for information we want to hear -vs- information we feel doesn't pertain to us. We always thank them for the information and then file them in the appropriate mental container. That scoliosis surgery, Veptr, is one we will file in the good to know category. Although I don't plan for William to every cross the surgery path, there are no guarentees.
As I watched the show it was moving. The young man featured was diagnosed at birth with congenital scoliosis & has had 40 plus surgeries in his short 15 years. His Veptr rods will allow him to grow without the continuation of invasive surgeries and recovery. He was an inpirational young man. Although it was hard to watch his segment, as a mother of a child with scoliosis, it was necessary.
The day progressed and the segment stayed planted in my head. I worked on client projects and still couldn't shake the show. Dr. Mchottie, while closing the segment commended the child as an inspiration to others. I couldn't agree more. What I waited to hear and never did was further information on Infantile/Juvenile Scoliosis.
Why when you hear the word scoliosis associated with infants, toddlers and young adolescents is bracing and surgery still the two most advocated treatment options? I guess I am overly sensitive but given the many success stories being generated from our group I would like to see shows such as this showing a screening and surgical prevention alternative at least proposed. EDF, aka Serial Derotational Casting, aka Mehta Casting should be offered as a first line of defence. Our 2011-2012 Graduates of the Lucky Cast Club are walking, talking proof there is a chance at a cure at best and an opportunity for growth at the least using this kind corrective technique.
As June is fast approaching, I plan to take a Kony type approach to early detection through screening at well baby visits, advocate treatment through casting, & widen our support for current families traveling the road of Infantile-Juvenile Scoliosis. Scoliosis Awareness Month will take on a new face with the Lucky Cast Club. Each of us have an obligation to share our story with the future generations. The amazing families in the Lucky Cast Club have remained constant and true proponents of not only advocating for their own children but also setting the ground work to make sure no family will travel this road alone. In an amazing twist of fate, we have yet to have a graduates family leave their role as supporting members of our group. That to me speaks to the foundation of support we as families have built.
If by a twist of fate the producers of The Dr's actually read this...tell the other side of this story. There are countless cases where EDF casting have prevented a lifetime of surgeries. It's time to make a change in the Standard of Care.
Stay tuned for Crooked event announcements from our Curvy Crew! We plan to make a Squiggly impact for Scoliosis Awareness month in June!
Until next time, Keep it Curvy~
Catie (Scoliosis Sucks) D.