Day 6 - Ocular Albinism

Connor was told to stay off his belly for 6 weeks after surgery. His next Physial Therapy session was in the middle of May 2010. He did a great job during tummy time and was happy to finally be able to play. At this time he was starting to try to lift his head up while on his belly. The PT did advise that she noticed some strange eye movement, possibly Nystagmus. Again, this was a term I had never heard of. I immediately called the Pediatrican and she referred us back to Boston. I researched nystagmus which is rapid uncontrolled eye movement, and found that it can be fairly common in children with down syndrome. However, when we went to Boston to see the doctor, Connor was diagnosed with Ocular Albinism which is completely unrelated to down syndrome. Symptoms of ocular albinism seen in Connor include iris tranillumincation defects and mild degree of hyperopia. Hypopigmented fundus with a decrease in foveal contour and hypopigmented optic nerve heads. The doctor did not give us much information so of course we researched that on our own as well. We were also referred to MICE program of NH. This Multi-sensory Intervention through Consultation and Education works with infants through age 3 with vision or hearing loss. We see someone once a month along with either physical therapy or speech therapy here at the house. We still don't know too much about how the ocular albinism will affect Connor in the long run as they say the symptoms can change overtime. All we know is Connor has and will have problems with vision and acuity. We have been told that he may have problems seeing pictures at a distance and seeing details. He will learn to control the nystagmus over time and may tilt his head in certain ways to see things better. I definitely see the nystagmus and it gets worse when he is tired, but he can certainly see which is great news to us. I remember when we first learned the diagnosis we were worried that he would not be able to see at all. Once he started crawling he would find the tiniest pieces of things he should not have on the floor and of course put them right in his mouth. I thought he wasn't supposed to be able to see such small items!  He finds cheerios on the hardwood floor from across the room and picks up small chunks of white cottage cheese off his white high chair tray. So although this will be a lifetime challenge, we do have a very positive outlook on it. He was given glasses in April 2011 to help with some of these vision problems. The only problem is that Connor is very against wearing them!  As soon as we put them on he wips them right of and wears them as a necklace instead. I wish he would leave them on because they make him that much cuter =)

And of course he will leave his Mem's glasses on without a problem...