Well, we met with the CT surgeon at CCH and let me just say that he EXCEEDED ALL of our expectations! He answered more questions than all of her previous drs combined - well almost. He really seemed to care about Sydney which is such a blessing, so many times drs have started to discuss things right in front of her with no regard as to how it might make her feel.
So on to the visit. He said if the NF1 were not in the picture he WOULD recommend repairing her chest. Not only to help with the scoliosis but to give her heart and lung more room. But of course NF1 IS in the picture and the tumor is very large and involved. So he plans to discuss surgery with all of the other members of the NF team. It may or may not happen. So we still don't have an answer but we do have a dr that we TRUST and that is SO important. I don't know when this meeting will take place. In the meantime Sydney has been scheduled for her next MRI. That will be January 21st.
Thanks again for all of your prayers - please keep them coming.