We are in exactly the same position with our 6.5 month old daughter who too has an H on her eyelid and in her orbit. We have not see Dr. Fay but have emailed - again surgery is recommended. We live in the UK and they tend to have the wait and see approach which I have concerns about. My dauther had a steroid injection and oral steroids and it has not worked for her (although it does work for others) - I just dont know what to do either. Do we do what the UK doctors say and wait for a while or do we take the risk or this type of surgery not to mention the cost (although expensive we would find the money from somewhere), there is also part of me that worries constantly about her being bullied.
Did Dr. Fay explain how they would do the surgery, remove behind the eye and reconstruct the eyelid? Was there any mention of long term scars and the risks involved in surgery. Obviously if we were going down this route we would have a proper consultation but your information would be very much appreciated.
Good luck with your decision and I'm sure it will all turn out for the best.