Typical?

A. has Pierre Robin and, therefore has an atypical cleft palate (is there actually such thing as a typical c.p.?). Anyhow, yesterday we went to see her craniofacial surgeon to discuss her upcoming jaw distraction in September. We also asked about the time-line for getting her palate repaired and were told that the tissue on her palate is in bad condition due to poor previous attempts to repair. He said that the only option at this point (beyond an obturator) is to sew her tongue to the roof of her mouth for (I think) 3 months and then slice off the part that has adhered to the palate to create a new palate.

Has anyone had this done, or even heard of it?????? Doc says it's pretty awful. And when a doc says it's bad, I worry. Would it be better to just leave the obturator in forever??? Anyone have experience with obturators?? With jaw distraction??