Tuesday, October 12, 2010

The Little Lad

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.


Kate said...

Rejoicing with you about the vision! I'm so happy for you that you get to build that bond with him.
He's darling. His toes are the cutest ever.
I'm sure you've thought of this...have you tried one of the noisemakers that have a running water setting? Ours has a river setting, a rain setting, even a waterfall setting (which makes me have to go to the bathroom, but hey, it must relax some people). I wonder if one of those would soothe Calvin??

Kara said...

Kate, we've tried the noise makers but I guess they have a different tone. It hasn't worked! I've thought about letting him wear headphones and try that route. Thanks for the input.

KarenKTeachCamb said...

Hi Kara,

So lovely to hear some good news about Calvin. Will keep praying for all those other issues. He really is cute, especially when asleep! Love to Darryl, Sophie, Noah and Evie.


trmills said...

Thank you for keeping us updated, Kara. We're always eager to hear how you're all doing, and how Calvin is progressing. I love the mental picture of you jumping for joy into Darryl's arms!

Christiana said...

This was such an encouraging post! Thank you for sharing these exciting moments! We miss you guys so much and continue to pray for you.

Becky said...

Kara, I thank God for you. You are such a huge encouragement to me. Mothering little ones is challenging enough, but reading Calvin's challenges makes me swallow hard against the lump in my throat. There are days I just want to sit and feel sorry for myself, but you -- through Calvin -- teach me to count my blessings. And what blessings to count -- just to know that Calvin has some vision, and that he giggles! To know that he has delight in things and that not all is pain and struggle. Here's to lots of bow-rich and water-sounds-filled moments!!! Hugs to you!!!