Eye Update 5 months old

After doing way to much internet research and having myself totally freaked out about Hagen's eyes, I finally convinced myself that ignorance wasn't really all that blissfull and it was time to face reality about Hagen's eye condition.  After a little more research on doctors I made him an appointment with Dr. Fullmer, Rexburg's opthamologist, and also a pediatric opthomologist in Pocatello.  Dr. Fullmer was first up and Weston and I went into the appointment with a tired grumpy baby and a little scared.  Dr. Fuller did a couple of tests with Hagen following objects.  He fussed and failed all the tests.  He then dialated his pupils and looked at the back of his eyes.  He asked all sorts of "strange" questions about if we had other kids and what color their hair and eyes were and if they had light or darker skin tones.  I was confused by all these questions and then he told us that he was almost certain that Hagen had a genetic disorder called Ocular Albinism where the back of the eye was lacking in color pigment which basically resulted in extremely poor vision. And here is the great news...there is absolutely nothing they can do for it.  What??? I was in shock, The amount of information he gave us was slim, he said it is a very rare condition and the levels of severity differ but most people are never able drive and many have to learn braile and attend special schools.  I am sure he told us more but that was enough to get my head spinning.  I was really devastated and really just felt so much shock.  Dr. Fullmer refferred us to Primary Childrens where they would be able to do more testing to ensure that this was indeed his condition.  He then excused us from his office.  I was in such a state of shock that I couldn't even really ask any questions.  I went straight home and did nothing.  Family members and friends called with all sorts of "helpful"information that they had found on the internet, but I just couldn't bring myself to even do any further research.  I thought I had his diagnoses pegged to Infantile Nystagmus Syndrome, and had told myself that it was simply wiggly eyes, big deal? No! I briefly skimmed over the sections under INS that talked about Albinism but since he had blue eyes and a hint of brownish red to his hair, I didn't think albinism was even a possibility. How wrong and naive I was.  I was hurt and offended when I heard people say, "I guess that explains why he is behind developmentally" What?? Not at all in my book. Hagen was right on where the other kids were at his age.  I also got the comment, "Oh, I am so glad to know that you noticed his eyes, I thought you weren't even worried about them." Ouch! Yes I noticed, he was a week old when I noticed, and worried would be an understatement.  After about a week of digesting the news and recieving emails and phone calls about my son's syndrome I decided to quit being annoyed with everyone and do my research.  Hagen's Primary Children's appointment was coming up and I wanted to be prepared with as much knowledge as I could so I could ask questions! I started making a list of questions, and the more I read and studied the more calm I felt about the whole thing.  Maybe it wouldn't be so bad after all! My baby wasn't going to die after all!