Saturday, May 11, 2013

Ready Set Chase

Hayes' initial meeting with his neurologist was yesterday.  Before I get into the details of the appointment, I'll just say that Koby and I have been thoroughly impressed and encouraged by the facilities and staff at Cook Children's.  It's REFRESHING to feel relaxed at the doctor's office, and I think it's special and to their high credit that we can have that experience while waiting to meet with someone about our son's possible brain problems.

And now, onto the visit.  Initial points earned by the neuro for having really unique, funky glasses.  He was very thorough and walked us through the entire MRI, showing us the optic nerves coming from each eye and crossing each other in the brain, the stalk-shaped pituitary gland, and the super-faint corpus callosum.

And the remarkable thing about the MRI is that it's essentially unremarkable.  The optic nerves look good, they cross where they're supposed to in the brain.  Nothing wrong there.  The pituitary gland looks fine.  The corpus callosum looks "a little differently shaped" than other corpus callosum, but evidently indicates nothing alarming. 

Good news: every thing looks in perfect order.

Still, reality tells us that we do know that something is misfiring.  Somewhere.

Things we learned: Optic nerve hypoplasia encompasses more than we thought it did.  Before our appointment, I thought ONH merely meant something was wrong with the long nerve bundles and/or the way they crossed in the brain.  It seems as if Hayes' problem lies in the nerve head - where the nerve bundles connect to the eye.  This is why the ophthalmologist could look into his dilated eyes and diagnose him ONH while the MRI looks pretty much normal.

At this point, we can't pinpoint the cause of his delayed development and low muscle tone.  Is it the poor vision?  Hard to tell.  Right now it seems that we can cross the possibility of septo optic dysplasia (often goes hand in hand with ONH) off the list.  Which is a good thing.  The doctor was pretty clear about his inability to predict the future, or indeed, to even tell us much about the present.  He was realistically and positively encouraging that our best actions now are to be there for Hayes at his current ability level: he will set his own curve for development, and we should act accordingly.

Sit in the office of a pediatric neurological doctor for a few minutes and you'll see all sorts of kids.  In my head, when I see the children in motorized wheelchairs, their MRIs are pictures telling clear stories: 'this is why your body is this way' markers.  Our doctor told us that's not always the case.  In fact, it's frustratingly common to HAVE NO IDEA why a child might be profoundly mentally retarded or experience global delays or have any sort of problem.  And vice versa.  For example, the corpus callosum can be completely absent in a person who is completely typical - grows fine, thinks fine, moves fine.  Every day I am more and more aware of how very much yet how very little we as a species know about ourselves.

The next steps for Hayes and us include two genetic tests: each will look at Hayes' chromosomes.  One will look at the set as a whole and one will focus on each pair in depth, and together they may lead us in the direction of a possible chromosomal abnormality that may explain why Hayes is the way he is.  Or, they may not.

The chase begins.

I've been wanting to write a post on body image for quite some time now.  (Maternity will do that to you.  Maybe being female alone is enough of a prerequisite.)  But my thoughts have gone so far beyond mere 'body image' that I don't even know how to begin my thoughts on THE BODY.  What a wondrous and terrifying composite of possibilities.

In the office I mused aloud, "After going through all this I wonder, 'How are any of us walking and talking and going around with nothing wrong?'"  The doctor stopped, looked at me and very sincerely said, "I wonder that

all. the. time."

'Health' is such a vague term.  If you asked me, I'd tell you that I consider Hayes to be healthier than Knox.  Knox has asthma, (undiagnosed) eczema, seasonal and possible other allergies, and a severe peanut allergy.  Hayes 'suffers' from nothing - he's as healthy as a horse.

Except of course for the fact that he has low muscle tone, developmental delays, and vision problems.  All of which he may grow out of.  Or he may not.

I'm just like most girls - ask me about my body and in seconds you'll hear about how I hate my teeth, and my nose, and how my proportions are all wrong.  My eyesight is awful, my body stopped growing at five feet, and my nonexistent eyelashes and eyebrows are a plaaaaaague upon my face. 

But motherhood began a change in me that I wouldn't have predicted - I came to accept and respect my body in a way I'd never experienced before.  I grew and nurtured two humans IN AND WITH my body.  I grew two babies and then fed those babies with my body.  What?!  While pregnant, I ran a 5k and felt bewilderment and wonder at the things my body could do.

And now since Hayes I've come to see that, bizarrely and utterly against the odds when you consider how much could go wildly wrong, most of us are  b o r n  p e r f e c t.  (To me, Hayes IS perfect, but... you know.)  My friend Sarah and I talk about how just because there are people starving in the world doesn't mean you don't get hungry... but Google how many chromosomal abnormalities there are and how devastating they can be, and you'll come to appreciate that if you can see this post, comprehend it, and could type a comment after doing so...

YOU'RE pretty close to perfect. 

And chances are, some person would do nearly anything

to be like YOU. 

And me.  Even with our extra ten-fifteen-twenty pounds and non-existent eye-lashes and bad skin and asthma and allergies and thinning hair.  Isn't that a weird thought?

And some parents will look at Hayes and be grateful for their blessings.  And some will look at Hayes and wish their children could at least have what he has.  And I don't think there's anything wrong with either of those situations - I don't think it's wrong to acknowledge and be grateful for our blessings, or in turn want the best for those we love.  I don't think it's done at the expense of anyone else.  And I've come to realize that the opposite of blessing doesn't necessarily mean 'curse' - and in the realization I've noticed a lot more blessings. 

Detour over.  Our visit wasn't negative, but it wasn't positive...  Was it?  I don't know.  I don't feel like it was anything except what we were before and what we are now.  Taking it one day at a time, not really knowing what's going on but looking at the sweet baby in front of us and doing what we can to help him get better today.  After the doctor left the office, Koby and I looked at each other and just gave a kind of ...


Moving forward... but it kind of feels like the beginning all over again.