Sydney's appts. went well last Friday. We were able to talk openly about our concerns. Initially it seemed that the changes in posture were due to "stiff" neck muscles and would be treated with physical therapy. But the xrays showed "some changes". That being said we don't have the official Radiology report and the Ortho surgeon has not reviewed the films. So for now the PT is on hold pending those reports. I would assume that within the next few weeks Sydney will have at least an MRI and possibly a CT/PET scan. As well as appts with Ortho and Pulmonary. On a positive note Sydney's eye exam showed no changes with regard to her NF1 and she did well with her appts.
Please continue to keep Sydney and her doctors/nurses in your prayers.