I hope you join our FB group if not, I would love to talk to you hear. Finding people is difficult and navigating some of the sites can be difficult. I adopted my now almost 7 year old daughter who have Dx with SGS, and we have many issues and have overcome some issues, it is great to have someone else to talk to so you don't feel so alone getting thru some of the difficulties. Can't wait to hear more about your child!!!