We took Hagen to Primary Children's last weekend and came home feeling very blessed and humble. We actually didn't really learn anything that we didn't already know, they confirmed he has Ocular Albinism and that he doesn't and won't ever see perfectly. However they were so positive and upbeat with us. We did learn though that it is really not as bad as it seemed to us at first. One of the doctors we saw was a funny brilliant little man who gave us lots of comfort and hope. He has studied Albinism for over 30 years and has only seen about 200 cases of ocular albinism, so it is really quite rare. He actually developed the testing for the condition and has written many articles on it. He awnsered most every question we had and spent a lot of one on one time with us.
We also learned that the type of Ocular Albinism that Hagen has will continue to improve and get better as he grows. His vision now is about 20/95 which is actually still in the normal range for kids his age. He will probably be prescribed glasses by age 2-3 to help "sharpen things up" but they won't fix the problem. He did tell us that he will never see in 3D but no big deal there, hopefully his vision will just improve enough that he will be mainstream in school and be able to drive someday. They also told us his nystagmus (shaky eyes) will probably diminish to the point that it is unnoticeable by his teenage years!
He could possibly develop a head tilt or head turn where kids cock their head off to one side to help get the best angle for vision that they can. This can be fixed with a little surgery by age six or seven if it is bad enough. His skin and hair will always be a bit lighter than the rest of the family and he will always sunburn easily, but nothing that a little sunscreen and a hat can't fix.
We will see the doctors every three months for awhile just to make sure nothing else comes up with his eyes and to keep track of his progress. They were actually super impressed that our doctor, Dr. Fullmer right here in Rexburg was able to diagnose him so easily with it being so rare and all. We will actually just be following up with him and then if the need arises we can always head back to Salt Lake. We have been set up with the Idaho School for the Blind so if any developmental delays show up they can help with that. Right now he is doing great, maybe a little behind where my other kids were at his age but still in the normal category as far as charts go. He is rolling all over the place, and laughing and talking like crazy. He has two teeth and can sit up on his own for like 2 seconds but hey!! Hagen is eating lots of baby food now and is a little porker, he is still small for his age but I have a feeling with the way he eats solid food he will catch up in a hurry. He is growing out of his swing which is a sad day for me, but he does like the jumper and the walker so I can still trap him in those for a bit. He also sits in the high chair now!!
I have learned that we all want nothing more than for our children to be perfect and healthy, but we can't always have that. I am super grateful that his problems are as minor as they are at this point. In the four hours we spent at the Primary Childrens Opthamology Center we saw a lot of much worse things than we are dealing with. I think when life gets hard we can take comfort in the fact that there is always someone with much worse problems to deal with!