It looks like we are back on this path, at least for the time being. We have managed to schedule her sedated MRI for the 2nd of October. We don't love waiting that long but it was the first available. Six days later she'll see her new neurologist at CHOP. (We have a neuro through neurogenetics but want someone who is overseeing her more regularly.) Then on the 11th she'll see her ophthalmologist to see what's going on behind that eye. I scheduled that one last since the neuro picture might explain the eye picture which would cut out an appointment.
So now we wait (and pray and pace). Hopefully we will have swift answers. We are so hopeful to continue avoiding surgery and shunts. We knew this day might come but nothing can prepare you for it.