I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?
I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is email@example.com
Gayle, age 47
Boston brace as a teen for AIS
Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
Feb 2012 major A/P revision for broken rods
mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
4/08 26 degrees, brace 16 hrs/day
9/08 17 deg. OOB - brace discontinued
9/09 30 deg, resuming brace
5/10 VBS Dr Luhmann Shriners St Louis
5/14 stable 4 yrs post-op, 14* T
also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)