Zoe's Scoliosis Surgery(VBT)

Thank you for taking the time to read our story!
Our 11 year old daughter Zoe has scoliosis, and her curves are 50 degrees thoracic and 50 degrees lumbar at last xray, and still progressing. This degree of curve is considered severe, will only get worse, and can't be corrected without surgery. We're going to Philadelphia for 2-3 weeks for fusionless spinal correction surgery, and are fundraising for costs associated with travel, missed work, and other related expenses. We're grateful for any support, not just financial, but even just comments showing Zoe support! We know money is tight for everyone, and it's so difficult to admit needing help, but when it comes to taking care of our kids, we're all willing to do anything. 

At Zoe's 6 year check-up, her pediatrician noticed a slight curve in her back and sent her for xrays, and to see a pediatric orthopedic surgeon. They said she had scoliosis, which is a sideways curve in your spine. She had a double curve, in an 's' shape, of 22 degrees thoracic and 28 degrees lumbar. She had xrays every 6 months, and each time her curve was bigger. Eventually she was fitted for a custom TLSO back brace at the orthotists. She wore it 16-18 hours a day for over a year, and hated it so much! It was so tight and uncomfortable, and she couldn't eat a big meal in it, or cough or take a deep breath, and it caused a few panic attacks too.
Her last appointment in April showed her curves were already in surgical range, even though she had been wearing her brace! Without surgery her curve will worsen when she hits her growth spurt, and continue to worsen by 1-2 degrees a year for the rest of her life. As it curves to the side, it also rotates, kind of like when you twist a rubber band. They recommend fusion when she's 13 or 14. This involves metal rods and screws up your spine, and fusing your spine into one inflexible bone. Over time, sometimes this can lead to disc problems above and below the fused discs. Sometimes fusion is necessary, and can be a great option, but Ryan and I really wanted something different for her, especially with all of her other health issues. I researched online for an alternative to fusion, and joined scoliosis support groups. I heard about a newer procedure called Vertebral Body Tethering(VBT)! This is a newer procedure, it's only been around for about ten years or so, and there are only a few dozen doctors around the world who do it right now. VBT involves screws being placed in the side of the vertebrae, and a flexible tether attached to each one, and with growth, it will help pull her spine straight. In Zoe's case,  screws will be placed fromT5-T11, and T12-L3. They'll operate on both sides because she's having a double tether. The best part of it is after 3 months, all restrictions are lifted and she can return to any activity, with no loss of flexibility! This isn't offered in Utah yet, but hopefully one day soon.
We sent her xrays to Shriner's in Philadelphia, where they have some of the best pediatric orthopedic surgeons, and the most experience with VBT in younger kids. They thought she would be a candidate, so Zoe and I flew out in August for a consult. Her curves at that appointment were 50T 50L. They accepted her for surgery, and now she's scheduled for a double tether in January. We'll have a 6 week follow up locally, but will fly back to Philadelphia for follow ups at 6 months, 12 months, and yearly until she's an adult.
We are very hopeful for this surgery to help her, and we are so happy and grateful that she is a candidate there! But, of course we are worried too, and wishing she didn't have to go through this. Right now, she doesn't have much back pain, but she has leg pain that we think is related, she gets worn out easily, and it hurts her to sit on hard surfaces for very long.
Surgery takes about 8 hours. She'll be in the hospital for about a week, then in a hotel for another week or so before we can fly home. 

Here's a link to a website that explains vbt better than me!
http://pediatricspinefoundation.org/
There's also a video, just go to the menu and click the Patients and Parents tab, and then click on Maddie's story.

Zoe's also had some other medical issues over the last few years. She was diagnosed with Type 1 Diabetes when she was 7 years old, hypothyroidism(Hashimoto's) at 8, and Celiac disease at 9(these are all autoimmune disorders). She also wears an insulin pump and continuous glucose moniter.The picture on the left is fusion, the right is VBT.