Mar 12, 2019 Latest post:
Jul 24, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Many people have been wondering what in the world is going on for our little girl. I hope this helps you understand a bit of her journey. Last November, Taylor came home from school in incredible pain and with her head turned and "stuck" to the side. After a quick visit to the urgent care, they diagnosed Strep Throat, which had caused enlarged lymph nodes and, possibly, the pain. She also had a follow up Xray and CT scan to rule out any abscess that could be causing the condition. Time went on and the pain diminished but she has remained "stuck". She has been doing chiropractic and massage for what we believed to be "torticollis" or a stiff neck. Finally, in the last month, we were encouraged by a friend to return to her primary care doc. She ordered new tests and included another CT scan. It was the CT scan that finally revealed her condition. Taylor has what is called Traumatic Atlantoaxial Rotatory Subluxation. We explain it to her as a broken neck. The C1 and C2 vertebrae are rotated over 40 degrees and displaced. We are incredibly lucky that she is ok and does not have any signs of neurological damage. We have consulted with a fantastic neurosurgeon at Gillette Children's Hospital in St. Paul. We begin treatment Tuesday, March 12. Taylor has a long road ahead of her. She will undergo surgery to attach a "halo" to her skull and begin inpatient hospitalization to receive traction therapy. This should take about two weeks. During this time, weight will be added to create space between her vertebrae and hopefully the vertebrae will move back into the correct alignment. Once they are back in place, she will stay in her halo but be attached to a hard vest. She will stay in that vest, which immobilizes the spine, for a minimum of three months, but will be able to return home. We are unsure as to how she acquired this condition, whether from a freak fall from the monkey bars or from the Strep. Strangely, Strep can result in Grisel syndrome that actually can create this rare condition. Regardless, treatment is the same. Taylor is in good spirits and understands, as much as a 6 year old can, what needs to be done. We appreciate the outpouring of support and prayers. As I said, the road will be long but we are very hopeful for a full recovery. Thank you for being a part of Team Taylor.