Kenton's Challenge

It's been a hard couple last days because we have been worrying about Kenton's eyes. First let me give you some background. There is an eye condition that runs in my family called, Nystagmus, which is involuntary eye movement from side to side, which effects eye sight. The women are the carriers and it skips every other generation. My great grandpa and his 3 brothers had it and my uncle had it. Well, because it skips generations my brothers didn't have it. I'm a carrier and we found out today that Kenton has either "congenitive motor nystagmus" or "congenitive night blindness" (which is in the nystagmus family). Either one he has, the treatment is the same (glasses, surgery, etc).

About a month before I was due with Kenton my mom and dad talked to me about this condition and told me the possibility that Kenton would get it. They said that I would be able to tell right away if he had it. As a newborn, Kenton's eyes did not act abnormal, so I thought phew, he didn't have it. At his 2 month check up I expressed my concern to his pediatrician about his lack of locking in on objects or people. He would respond to them, but not follow them. Kenton was not making eye contact. She said that it could be still developmental, but to watch it. A couple weeks later I noticed still no locking in and noticed more eye movement from side to side. For example when people see his eyes they say, "Wow, look at him, he's trying to take it all in!" Basically it looks like he's over stimulated. Feeling that "mama" feeling, I called his pediatrician and explained what was happening. She referred me to a pediatric opthomologist. We got an appointment and of course had my dad come with me (my dad is an optomotrist for those of you who don't know).

So...today was the appointment (thanks to others cancelling and letting me get in early). The opthomologist did different eye exercises with Kenton. Some Kenton responded to, some he did not. He also dilated his eyes and told us that his eyes developed correctly and are healthy, which is a great thing. He also said that Kenton is seeing (I knew that though) but probably not as good as other babies his age. How much less, we don't know due to his age. He referred us to a doctor in Portland to do a "ERG-Electric retinal graph" on him. No one in this area does it on young babies. This test can possibly show us nothing, but it could also show us something. The way I see it, the test results are a starter point. It can be used to compare as he gets older to see if changes or what changes take place. Once we go, have the tests, and results, we will meet with our opthomologist to see the next steps. Being proactive parents, TJ and I wanted to know what we could do to help Kenton right now. Is there any exercises we could be doing? But, unfortunately there is not because he is so young. Do you see a trend??? It's hard to find things out on babies! But it's also hard for me to do nothing! I guess my job right now is to do more research because I am still learning about it.

Also, the thing to do right now is to love him and not treat him any different! I know he sees and responds to people he knows! His smile, babble, and giggle has me hooked. I have friends that are dealing with FAR WORSE things with their children, so I can't help think, "Emily, if this is all he has to deal with, then you can't complain!" BUT, he's my baby. I want him to be healthy. I don't want him to have to struggle in life. TJ reminded me that Kenton chose this life. He knew what we was going to go through, which is why I pray that he will have a strong personality. TJ and I are his parents. We are positive people and will do what we can to help his succeed.

(p.s.-I can't help HATE my genes right now!)