Wednesday, May 21, 2008

To tell or not to tell...

One of the things that people most compliment Rylee on is her eyes. I am starting to notice the same thing with Tegan. But I wonder when people compliment him on having such pretty big eyes do I just say thank you or do I blurt out...thanks but he has nystagmus, which is a vision impairment that makes his eyes move constantly from side to side. I mean do other people, complete strangers, notice his eye movement or not. Do they see it and say he has pretty eyes b/c he does or b/c they notice something different and are trying to open the door for me to explain what is happening. See to us his eyes don't move all that bad anymore, it has definitely improved but we aren't sure it looks to much better b/c we are use to it or b/c it really is less noticeable. He has what I call a flirting look which is when he looks back at you with his chin down toward the floor and cuts his eyes up at you. It is so cute and people love it when he does it. They think it is his character but I have started to notice that it isn't him being a character at all but yet a place where he can hold his eyes and have no movement at all which is called a null point. His null point can change many times between now and 8 or 9 years old. Depending on where it ends up at he may have to have surgery to literally turn his eyeballs b/c the big problem with null points is that they are usually to the left or right and they have to cock their heads which could give their head a permanent tilt. But so far his is more straight forward and he doesn't always have to tilt his head but most of the time he does.
Which leads me to the next question...when people ask how old is he and I say 9 months old and they say "Oh is he crawling and getting in to everything yet?" Even though I know that Rylee wasn't even crawling at 9 months old, do I say no not yet or do I say, he has had a developmental delay and goes to therapy to catch up.
This all comes from when people ask me how many kids do I have, do I say two or three?
When they ask if we are having more do I say no b/c we buried one baby and almost lost the next one not to mention the third child has had lots of medical problems and oh by the way he has a vision impairment called nystagmus and has some developmental delays that we are working on.
After re-reading this I think the best answers are thank you for the eyes, no not yet for the crawling, three for the kids without elaborating and nope we are blessed to have one of each on the kid thing. It seems less stressful!

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