Wow, it's been quite a while since I posted. Summer has flown by and I will post some pictures soon but I wanted to update anyone who still reads this blog about Rocco's most recent vision updates.
Rocco continues to do very well visually but we recently took him to see a doctor in Akron, OH who has done a TON of research on nystagmus (the involuntary eye movement that Rocco experiences because of his Albinism). Rocco's eye doctor here is really good but when you hear about someone that is an expert on a condition your child suffers from, you have no choice as parents but to pack up and go see what he can tell you. And I'm so glad that we did. This doctor was really great. He had no ego whatsoever (which can be rare in doctors, in my opinion) and he explained everything very thorough and in a way we could easily understand.
We have been told that Rocco does not have a null point (which is a posturing of his head which results in his best line of vision). However, this OH doctor noticed that Rocco does indeed have a null point as soon as he saw him. It's a slight one so it's not that obvious. He said most clinicians miss it even though most kids with Albinism have it. His chin points down toward his chest (slightly) and his eyes have an upward gaze. We have seen this but didn't realize it's a null point. But as the Dr. pointed out, why shouldn't he be looking straight forward like most of us do?
The Dr. said it used to be thought that people with Albinism would never see better than 20/200 which prohibits them from driving. However, his research has found that the more actively and aggresively you treat the low vision when a child with Albinism is young, the better the chances they could have vision as good as 20/80 as an adult (which would allow them to drive!). The brain needs to see the most clear images as possible while it's developing so that it can recognize clear images in the future.
The way to do this is through glasses and/or contacts, surgery and, in some cases, with medicine. So, he gave us a prescription for glassess/contacts for Rocco. Contacts would be best because they give the best possible vision and they move with his eyes so his null point wouldn't be hindered. They can also be "painted" to block out light since his eyes are senstive to light. He said contacts on a kid Rocco's age (18 months) is possible but it's a family decision. His suggestion is to try them and if we can't make it work, try again next year. Keep trying until we get it. So we are going to look into contacts but I don't have high expectations since I can't see Rocco letting up put in or remove contacts from his eyes (and I'm not sure I can do this even though I wear contacts!). We did get Rocco fitted for glasses this past weekend and he should have them within the next 2 weeks. I'm hoping he will realize they help him see better and that motiviates him to wear them. We got ones that are super flexible so hopefully our "little bruiser" won't break them right away!
The other option the doctor reccommended at this point is surgery to correct or improve the nystagmus. The good news is that our STL doctor can perform the surgery. We have an appt. with him in Dec. but the OH doctor would like us to go in sooner. He already called our STL doctor and detailed his reccommendations. Eye surgery is scary to think about for Rocco but we have to do everything we can do help his vision. In additon to correcting or improving the involuntary eye movement (nystagmus), the surgery should also improve Rocco's null point so he will be able to look straightforward for his best line of vision. I'll update when I know more about when the surgery is scheduled but for now, please keep Rocco in your prayers that all of these measures will help him.
Rocco continues to do well with everything else. He has his 18 month check up today so I'll update with his stats. He has a substitute vision therapist right now while his usual one is out on personal leave. The sub came over for the 1st time this week and just couldn't get over how well he's doing. She said he is the coolest 18 month old she's ever seen and he has excellent receptive communication skills. She was impressed with his somersaults and she also couldn't believe how well he sat and looked at a book with her. She said she's never seen an 18 month with that attention span with a book. So needless to say, we're pretty proud of our little guy! He's definitely dramatic and a little rough but he's smart, funny and is developing into a quite the little boy!
-Dawn
