Our daughter Valentina, now 15 months old, also has a H on her elft eyelid. It started growing at 10 days and by the time she was 2 months old it was very big and pushing her eyeball. We monitored her vision with a ped opht and her astigmatism in that eye went from 1 to 1.75 to 2.5 to 3 in weeks. At the time we were very scared of surgery even though our pediatrician had strongly recommended it, so we went the oral steroid route. She was on the meds for 9 months with great results. Her H stopped growing and even shrunk a lot. However her eye didn't recover, so we ended up having to have 2 surgeries. The last one was 2 weeks ago at 15 months old in NY with Drs Waner and Levitin. I want to comment on what Corinne said about rebound growth also. Valentina's first surgery was 2 months ago at 13 months. The H was "supposed" to have stopped growing by then so her surgeon only did a partial resection. This way the scar would be minimal and the remaining H would go away on its own. Well the H had different plans and grew right back, increasing the astigmatism again. That's why we had to have the 2nd surgery. Let me know if you want to see pictures.
In terms of insurance, we've seen a dermatologist ever month, had 2 surgeries and 3 laser surgeries and they have covered everything. We even got them to cover an out-of-network Dr. (Dr. Waner), but not without a fight. I have plenty of appeal letters and request letters so let me know if you run into problems in terms of coverage.
I have consulted with Dr. Reinisch over the phone and he is great. I know a lot of parents that took their kids to him and couldn't be happier. Good luck and let us know how your appointments go!
Marina and Valentina