I am so sorry to hear about all your daughter's troubles. From the photos and your description of her back, in really sounds like she needs to see another revision expert. As Linda mentioned, Lenke would be a great choice. He also has a partner, Dr Scott Luhmann, who is outstanding and specializes in pediatrics. Dr Luhmann did my daughter's surgery at Shriner's St Louis, and we loved him. Dr Lenke I believe also does some work at Shriners St Louis.
I would strongly recommend you contact Shriners Hospital St Louis directly. Dr Luhmann's nurse, Janet Schick, should be able to assist you. Her number is 314 432 3600 x 1611. In the meanwhile you can download an application (which is a simple formality) and send it in. The only requirement is the child would benefit from Shriner's specialized care, which goes without saying in your daughter's situation. All care is free of charge to the family, although they will bill any insurance that is available to defray the costs to Shriners.
My daughter had a simple surgery (vertebral body stapling), but we had wonderful care in St Louis. Family services there can assist with travel arrangements/lodging/expenses etc. Everyone was very helpful and supportive.
Good luck, don't be afraid to persist until you get your daughter seen. Please let us know how things are going.
Gayle, age 48
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
Aug 2015 rods broken L5
mom of Leah, 13 y/o, diagnosed '08 with 26* T 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
4/15 stable 5 yrs post-op, 18* T/ 22* L, Risser 2
also mom of Torrey, 10 y/o son, 16* T, stable