Thank you to everyone who read Goldie's long birth story. I'll try not to leave you hanging much longer. But, I just had to post about today!
Goldie was diagnosed with Nystagmus when she was about 4 months old. Basically, her eyes jerk back and forth and she is unable to focus on anything. Even though the DS "caused" her nystagmus, I feel like the nystagmus has affected Goldie's development more than the DS. It has improved tremendously since she was an infant, but it is always there.
I took her to an ophthalmologist at 4mo, 6mo, and 1 year. She has also had Vision Therapy for the last 14 months. At Goldie's 1 year appointment I had some specific questions about her vision that they were unable or unwilling to answer. I felt that her diagnosis of nystagmus was being trivialized. At one point, the doctor told me "most babies are legally blind anyway". Um, no, not at 12 months. I was told there was no treatment.
I'm basically skeptical of doctors anyway, so I decided to get a second opinion. After months of research and talking to Goldie's VT I made an appoint with a doctor at our children's hospital. He specializes in nystagmus. I don't know why we weren't referred to him sooner, but that's ok.
We saw him today. He gave us what every parent wants, hope. I learned more about Goldie's vision from this doctor in 5 minutes than I have in the last 2 years. He picked up on ways she was compensating that no one had noticed. He explained how treatment will help Goldie and that she is at the perfect age. Seeing him sooner wouldn't have changed anything because children respond better to treatment after they are walking. He said most children with nystagmus are left untreated even the surgery is very similar to the ones used to correct strabismus. Some of the things I learned made me sad. Her vision has probably been much worse than we were led to believe. I've known there was a lot she couldn't see, but I wanted to believe that it wasn't as bad as I thought.
We left with a large book written by one of his adult patients. I started reading it on our way home and already have a list of questions started for when we see him again in 3 months. The woman who wrote the book is from California. She was unable to find anyone to help her, so she flew across the country to meet this dr. I can't tell you how blessed we feel to have him in our "backyard".