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8/3/2017 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. In June of 2017, Avery had a physical/check-up scheduled. That morning, she pointed out to me that her waist was uneven, and I suggested that we would mention it to her pediatrician since we were seeing her that day. At this appointment we were immediately told that Avery had scoliosis and it would be best to go the the Children's Hospital in St. Louis to get x-rays and see an orthopedic doctor. At St. Louis Children's, Dr. Brian Kelly met with us to review the x-rays. He said in a lot of scoliosis cases are idiopathic, meaning they have no known reason or cause, but at looking at Avery's x-rays and her response to some nerve tests that he did, he suggested that we have an MRI to make sure there was nothing causing her scoliosis. Weeks later the MRI was done, and the results came back that Avery has chiari malformation. Chiari is when a part of the brain, called the tonsils, has grown outside of the skull, either as a fetus, or as an infant when the skull is still soft. This malformation has caused a build up of spinal fluid that cannot travel properly and has caused a syrinx which is a pocket of spinal fluid or cyst within her spinal cord. The solution to this is a surgery to remove a small portion of the bottom of her skull and the first vertebrae which should help the spinal fluid be able to move freely and the syrinx, with time, should dissipate. There is still research being done on whether Chiari is genetic, so we have joined the research trial at St. Louis Children's. There is also a clinical trial for the surgery to develop a data for success rate which we have also joined. We will not know if this surgery is successful until 6 months after, when they will do another MRI to check progress. If it is not we will deal with that then. The scoliosis is a separate issue, although caused by the chiari and Avery has been fitted for a brace that she will wear under her clothes for 18 hours a day until she stops growing, around age 14 or so. I have started this website with Avery's permission as so much of the decisions this summer are not hers and this website, I am hoping, will give her a voice to how she feels, how she is dealing with these changes, and to give her an outlet. Many of the entries will be Avery's, and I will update some medical entries as needed. Surgery is August 9th. Check back for updates!