My daughter Olivia was diagnosed with severe scoliosis in June of 2013 while being treated in physical therapy for a pelvis avulsion fracture caused from competitive cheer. When her therapist noticed it and sent us to have it looked at, the news was devestating, as her degree of severity at the time showed 2 curves measuring 36 degrees. To put it into perspective, 7 degrees is the cutoff for a true scoliosis diagnosis. We were seen again in September and luckily it had not progressed, but sometime during that month into October, Olivia began complaining of terrible back pain and spasms. Although she was not to see her spine specialist again until this month, we got her in again in early December 2013. The results came back worse with the top curve increasing to 43 degrees. At this time she was fitted for a Boston Brace which she received the day after Christmas with an order to wear it 23 hours a day. This has not been easy for this very active 13 year old!
Around this time, I was introduced to a spine surgeon at Shriner's Hospital in Philadelphia who over the past 10 years has perfected a fusionless spinal surgery that has less complications and quicker recovery time then the traditional spinal fusion surgery discussed with us here in Tallahassee. We traveled to Philadelphia to meet with the surgeon who ordered many xrays, and after consulting with his team, we received news that she was a candidate for two different surgeries. So we received good news amongst some bad news. In early February, Olivia developed a cervical curve as well, and now has three curves total. They measure from the top down, 25.1 (cervical), 57.3 (thoracic), and 38.1 (lumbar). The first surgery will consist of a half spinal fusion to fuse thoracic vertabraes T2-T12. They will let her begin to heal in the hospital for about a week to ten days before her second scheduled surgery. This one will be a half vertabral body tethering (fusionless) on her lumbar spine. Olivia's time in the hospital is right at three weeks. Olivia's upper spine is not only curved but twisted inward. It is the hope that fusing the top part of her spine will allow the bottom to straighten out. However if her lumbar spine does not straighten, she will be the first ever to receive this kind of surgery (fusion and tether). For us, this is exciting but scary.
I will accompany Olivia and stay with her at the hospital. We are asking for assistance to cover out-of-pocket costs for pre-operative tests including MRI's EKG, Pulmonary Function tests and labs, pain medication, accomodations once she is out of the hospital while awaiting news she may fly home, and to cover costs associated with my not being able to work. Because my position is not a full time salaried position, when we go to Philadelphia, I will receive no pay until Olivia is well enough for me to return to work. Olivia will receive the best care at Shriners in Philadelphia but are reaching out to family and friends to help offset that which will be difficult to cover in its entirety. I am happy to announce that our air transportation is being covered by the local Shrine Temple here in Olivia's hometown, and they have been amazingly kind to our needs for transportation.
We appreciate the love and prayers we have received so far, and are grateful for any assistance we may receive in the future. I look forward to keeping everyone up to date as we get closer to Olivia's first surgery date of May 12, 2014. And please feel free to share this with others if you so desire. We appreciate the support.
Laura and Olivia
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