During a really long week of tests we have gotten good news and some concerning news. First the good, all of the results that we have received from the tests at Children’s have been normal. We are still waiting on the biopsy and pH probe results.
Today we had Will’s eye doctor appointment to check his nystagmus. She has diagnosed him with Ocular Albinism, which means he has decreased pigment in his eye (mainly retna) which leads to decreased visual acuity. Nystagmus, the side to side eye movements he has, is a sign of this condition as well.
She tested his vision, which isn’t easy with a baby and he can see, but his vision is below normal for his age. He is not to light sensitive, which is good and he has pigment in his iris. So the hope is that he will have a mild to moderate version of this condition. Unfortunately we will not know what his vision will end up like until his is at least 2 or 3.
We are still learning about this condition and what it will mean for him. If he has a mild case then he could have normal or close to normal vision. If he ends up with a severe case he could be legally blind. The doctor thinks he will fall in the middle of the spectrum. She has referred us to another eye doctor to confirm this diagnosis.
Here are a couple of links to some information that we have found so far. As we find out more information we will post it.
Needless to say we both are having difficulty processing all of this and what it will mean for him. We are hoping and praying that he will be on the mild end of the spectrum to give him the most opportunities. As Jim put it, this is our new normal.
As if Will knew that we needed some hope, he rolled over today. And yesterday the 2nd tooth poked through. He is just an angel.