My daughter had an eyelid h - a little different than yours, but first off, she is prescious... second, she is lucky to have you out there trying to make sure she gets treatment and seeking out help. We went to NYC to Waner's group and he also can have Faye consult in. Best of the best. Feel free to e-mail me privately if you would like to see photos of my daughter's h. I am happy to share and help in any way I can.
One tip to you - when you start this process, it can seem confusing and overwhelming - find someone you can lean on that will be honest and supportive that has been there, and they will help you through the mess. And then, before you know it - you will be on the other side ready to help others. My daughter is now 2 1/2 and I can tell you I never dreamed we would go through all we did - and feel so normal and finished like we do now.
Happy holidays and please feel free to contact me if I can help in any way.