8 year old Madelungs Deformity

My daughter thought she broke her wrist at soccer. Immediately we noticed the jutting forward of ulna and took her for an X-ray. Dr. Says it’s not broken while I’m looking at an X-ray of a completely curved and bowed radius. I responded, it’s not normal, to which he agreed and asked to X-ray other arm. He confirmed diagnosis of bilateral radial “dysplasia” and told me to see a a specialist. Thankfully, we got into a pediatric orthopedic plastic surgeon who specializes in the upper extremities. He recommended the Vickers release procedure on both arms, three months apart and made us feel grateful to have caught this early. The first Vickers release was performed 5/3/18 and scheduled for the next one 7/26/18. I am desperate to find anyone else who has been through this or down this road with a young child so I can do EVERYTHING possible to help my daughter.