Please keep up with the eye doctor and Glaucoma checks. Glaucoma is a life long issue for our little one's.
My daughter just turned 4 and she has a left facial pws. She has been treated very agressively, beginning at six weeks old.
Heat is a dilator and for many people their pws gets much darker when they are warm. My daughters gets dark every night in the bath tub. It may be hard to know if it is the heat or if you are seeing some kind of return. Your doctor ahould be able to help you. I do not know anyone in Ill. but I will look around and try to find a Vascular Abnormalities SPecialist near you. Are you willing to travel? and if so, how far?
All you can do is keep reminding her that she is beautiful and loved and her pws is a part of her. I know it is hard. I can't help you much with personal experience because my 4 year old just noticed hers a few weeks ago.
She did not seem to be too concerned. Do you know anyone else with a pws? Do you think it might be a positive thing for her if she sees another child with a pws? If not in person, maybe online????
How did they rule out sws? AT what age? Did they do an MRI with contrast?
Good luck and nothing you can ask would sound stupid.
Please ask away.