One of the first things I noticed in
Calvin's first few weeks of life was his wandering eyes. I would snuggle him close and rock him by my side and he would never look at me. Not even in my direction. And I knew something was very wrong. As the months rolled by I would anxiously look for some sign that he could something, a shadow, flashing light, sparkly toys. Nothing. When we saw the MRI it was evident the area of his brain that receives the information from the optic nerve was very damaged. He has cortical blindness which simply means that nothing is wrong with his eyes, just the area of the brain that interprets what he is seeing. Sometimes vision can improve with therapy and time.
In the last few months we would find catch ourselves wondering, "Did he just see something?" "I think he just followed me!" And we carried on with our speculations and hoping.
And now we can say definitely, he is starting to see! I can't tell you how it feels to look down and see him looking at my face. Really looking. I don't know how much he is seeing, perhaps it is just a shadow, an outline. But he knows there is something there. Shiny objects really catch his attention; I've put together a lovely collection of shiny, tacky Christmas bows from the dollar store and "turn on" his vision with these.
Yesterday I put him in his bouncy seat and taped bows up so he could see them. Darryl and I stood watching him as he put his hand up and brushed the bow and gave a giggle each time he hit it. I can't tell you what a HUGE thing this is for him: a)he could actually see the bow b)his little brain told his arm how to move c)his response was to laugh!. I quite literally jumped up and into Darryl's arms. If anybody had been watching us they'd of thought we were crazy getting excited over something so small. But when you see no progress for nearly his entire year of life, this coordination was a serious call for rejoicing. We feel like his little person is able to emerge in small ways we had never seen before.
He still is having a lot of difficulty with sleep. We are not sure if he is neurologically able to stay asleep, calm himself, etc. So we take turns with him at night as he is awake often. He cannot suck his pacifier on his own so much of the night is spent with Darryl or I holding
the pacifier in so he can sleep again. Naps in the daytime are nearly impossible and non-existant.
Because of the brain damage he has a very hard time transitioning from sleep to being awake. Most mornings begin with hysterical screaming which can often only be quieted by the sound of faucets or showers. Something about the sound of running water quiets him and allows him to transition to being awake.
Once he is "on his feet" (something that can take hours) he can can be quite a happy little lad, as long as he is in my arms anyways. We are delighted by his giggles and his love for music. Instead of the traditional toys, my purse is packed with bows and harmonicas.
We have two hurdles that we are praying about and trying to find a solution to. The first is his dreadful reflux. It is ever present and makes his life miserable. He may have to surgery to help this but it's not without negative side effects. We have to weigh the two bad choices and decide which is better. The second is trying to find a way to make him comfortable. Whenever he sits he gets stuck in extenstion--his legs and arms involuntarily go out straight as if he were stretching and he is unable to release it; it's painful. This means I carry him everywhere and he is usually in my arms the entire day. He's becoming too large to carry and my body is feeling the strain. Thanks for praying with us.
Look at those perfect little feet.