We went to a pediatric opthalmologist today and although he did admit that Ali’s problems are outside the scope of his practice, he did an examination and gave me his opinion. Ali did respond to some of the targets by either looking towards or away from the light and she obviously responds to light but she probably has horrible functional vision.

Ali’s optic nerves are both underdeveloped and her right optic nerve is also discoloured. The opthalmologist told me that when it comes to optic nerves, what you’re born with is what you keep so no chance of improvement over time.

Ali also has quite a substantial nystagmus. Nystagmus is related to the communication between the eyes and the brain and since it’s a neurological issue we need to see an opthalmologist that specializes in neurological opthalmology. The opthalmologist told me that sometimes it improves and sometimes it doesn’t but that to get a good understanding of any neurological issues that may exist we need to wait until we see the other opthalmologist. So more waiting I guess. She’ll probably be booked for an MRI as well to clarify any problems.

It’s really tough to get more bad news. I wonder what’s next?

So this information leaves me feeling really confused because I was so sure that Ali could see me. I’ve seen her smile at the dogs and at her home care aids so I thought she could see. I knew that her vision wasn’t great and that sound was helpful to her but I was really surprised to hear that it is as poor as it seems to be. I am even more in awe of her development then I was before today. She’s already proven that she’s a little fighter and that she’s a superstar and now we know that she’s been challenged in a way that we didn’t realize and still she’s managed to develop and learn. She’s already overcome a drug overdose that would have killed some babies and she’s just going to have to overcome all the unfortunate symptoms of Costello Syndrome. Poor eye sight included!

So now I guess we go back to enjoying our baby and taking joy in all her milestones. We’re trying to stay positive and keep on doing what we need to do but to be honest it’s hard on a day like today.