Fourth Time's the Charm? Another EEG...

Aunt Melissa met us for breakfast in the Cook's cafeteria after our 8 am appointment this morning.

I didn't put much effort into this post, so I'm sorry in advance for how poorly written it is.  I'm just too tired to try very hard to assort my thoughts into a pleasing order.

When we scheduled the MRI for Hayes in August and expected to see our neurologist to discuss the results in the following November, we had no idea the events that would transpire that would lead us to meet with the doctor an entire month early.  Never would we have expected the events that could occur within a matter of weeks.

So it happens that in the six weeks since the MRI, we have witnessed Hayes have countless seizures, visited the children's hospital five times, watched Hayes endure the EEG procedures four times, administered three different medications 94 times, missed a lot of days at work, and driven even more miles.

It. has. been. crazy, up. in. here.

Today, we finally met again with the neurologist who's been with Hayes since he was younger than six months old.  He gave us a wealth of information, compassion, and comfort.  We like him because he is straightforward in his discussion and treatment approach.  We reviewed Hayes' MRI and EEG results, responses to medication thus far (we began ONFI last Friday night with good results, and began tapering off the steroid yesterday due to the undesirable side effects and the fact that he was still having seizures LIKE WHOA), and discussed the future (as far as the next few months).  He (the doctor) ordered labs, an ambulatory EEG, planned for an upcoming spinal tap (to check for metabolic conditions that may be causing his underlying brain disorder), and answered our questions for over an hour.

We'll be checking this EEG unit every hour or so for its blinking yellow light, which means the brainwaves are still being recorded.

After being at Cook's rather longer than we'd planned, we brought Hayes home once again hooked up to his EEG gear.  (An ambulatory EEG is completely mobile - we brought the whole EEG unit, which is about the size of a paperback novel - home with us.)  We'll be monitoring his brain over the next 24 hours to assess how well the ONFI is actually working, and then Koby will return the EEG unit to Cook's tomorrow.  If the medicine is not working as well as we'd hoped to stop the seizures, we'll increase the dosage and/or begin ACTH injections.  The ACTH injections carry a less-than-attractive array of side-effects and risks, but prove effective quickly when most other medicines fail.

The reason we're treating these seizures so aggressively lies in the diagnosis that was added to Hayes' collection today: West Syndrome.   This is a rare form of epilepsy that occurs primarily in infants (which is the only reason the epilepsy specialist did not attach this name to Hayes' seizures - but our neuro says, and I quote, "If it quacks like a duck...") and can occur for a variety of reasons, but generally leads to unfavorable long-term consequences if the seizures cannot be completely eradicated.  If uncontrolled, Infantile Spasms can evolve into a lifelong epileptic condition called Lennox Gastaut Syndrome (LGS).  (Please note that Hayes does not have a diagnosis of LGS right now.)

Even though this a brand new diagnosis, Koby and I aren't blindsided by any of the information we got today.  The worst part of the day happened as Hayes was getting his EEG underway; the tech was testing all the connections and watching his brainwaves on the monitor and...

I think he had a seizure.

Total nightmarish feeling.  Very, very bad feeling.  Please pray with all your might that the little blip I saw on the computer screen, that the instantaneous flinch of his precious body was the LAST SEIZURE HE'LL EVER HAVE.  I'd really appreciate it.

At the conclusion of our appointment this morning, our neurologist casually added, "Oh! And thanks for the blog."

Apparently, there is an employee whose job it is to scour the internet and social media for mentions of Cook Children's Hospital and see what's said... which gives me an idea.  (It also gives me an idea for a serious career calling that I totally missed - this girl can Google ANYTHING.  I've probably done two bachelor's degree's worth of research on Wikipedia.)

Hey, Cook Children's Hospital (a.k.a. Cook's, conveniently located in Fort Worth, Texas for your convenience), you know what would be awesome?! Why not start an EEG customer loyalty program?  You know, BOGO offers?  Punch cards?  Frequent flyer miles?  Just a thought... (Cook Children's.  :-) )

Peace out, dudes and dudettes.

What IS Optic Nerve Hypoplasia? - Everything I Know Part 2 -

Okay, we're back.  I hope from my last post you were able to come away with a general overview of what optic nerve hypoplasia is.  If you didn't catch that post, or if you've stumbled upon my blog because your child was just diagnosed with optic nerve hypoplasia, I'd recommend beginning here for information, or here for the beginning of our own story with ONH : )

In January I attended a conference put on by the Texas School for the Blind and Visually Impaired (TBSVI) specifically for parents of children with ONH.  At this particular meeting, we were able to hear information from an ophthalmologist who had become something of a specialist regarding ONH.  I loved what she said at the very beginning - ONH is a brain problem.  It's not an eye problem.  That's why vision isn't (always) the only thing affected by ONH.

The optic nerves exist in a part of the brain called the 'midline'.  Because kids with ONH obviously have malformations in this part of the brain, one of the first things that happens (or SHOULD, MUST, MAKE IT HAPPEN) after an ONH diagnosis is a referral to an endocrinologist and an order for an MRI of the brain.

Below are two pictures of different views of the brain and its regions/parts/whatever you call brain stuff.

The first is a side view - the midbrain that is usually checked for additional abnormalities after the diagnosis of ONH includes the corpus callosum, the hypothalamus, and the pituitary gland.  (Image courtesy of a Google search, which yielded this picture in a foreign language.  Good luck with the link.)

This picture (below) shows a view of the brain from above.  You can see how the optic nerves cross just in front of the pituitary gland in the middle of the brain.  (Image courtesy of some lecture notes from a community college.  Knock yourself out.)

Okay, so what does this all mean?  Why are these parts of the brain important?

First and foremost, let's discuss the pituitary gland, aka the reason you'll be referred to an endocrinologist (doctor specializing in glands/hormones).  The pituitary gland is responsible for secreting the hormones that keep the body functioning normally.  Because hormone abnormalities can have drastic consequences (loss of consciousness, mental retardation, even death), it is imperative that a child with an ONH diagnosis be monitored for pituitary function.  And because the hormone levels can fluctuate at any time or stage in life, people with ONH should continue to be monitored with regularity even if everything is functioning normally.  Sources vary, but it is reported that 75-80% of people with ONH have some degree of pituitary dysfunction.

The hormones secreted from the pituitary gland are responsible for the following things:

• growth, temperature regulation, sex organs, thyroid gland function, metabolism, water balance/regulation in the body (related to kidney function as well), blood pressure, and pain relief 

Your endocrinologist will regularly monitor your child's hormone levels by ordering blood tests and, at each appointment, check to make sure she is growing normally.  This specialist will also review the results of your MRI.

Hayes' hormone tests have come back in the normal range after each screen.  He has always 'thrived', which is to say, grown and eaten normally.  He is tested every six months and will be until he is 2 (or 3, can't remember).  At that point, if he is still maintaining 'regularity' as far as his hormone levels, he will only be checked once a year.  Of course, if there are any changes in behavior or activity, we will contact his endocrinologist to run tests to make sure something hasn't gone awry, because hormone problems can manifest themselves at any time.  (For more information about the pituitary gland, talk to your endocrinologist and click here.)  And, for the record, I love our endocrinologist.  He is hilarious and looks like Dennis Hoffman, and he thinks I look like Brittany Murphy.  I was not as thrilled and am still confused about that.)

This is Hayes and me at his endocrinology appointment on my birthday in 2013.  As you can see, he's chunky thriving, and I look nothing like Ms. Murphy.  No offense to her, and may she rest in peace.)

Let's talk about the MRI.  An MRI is an image done by magnetic resonance imaging.  I have basically no idea how this works.  Okay, I have some idea, but I feel more comfortable explaining why a person with ONH is ordered an MRI than how exactly the MRI is done.  (For much, much more re: the MRI, please talk to your endocrinologist/neurologist/ophthalmologist and click here.)  The MRI for ONH will be focused on the brain, and will be specifically taken for review of the midline.  

We had a few issues as we went to have the MRI done in the spring of 2013.  Hayes was getting over RSV and had recurring colds, which led to us postponing the scan once before we finally got to do it.  I was a nervous wreck.  Because Hayes was only six months old when he had his MRI done, he had to be put under anesthesia in order to ensure his absolute stillness.  He also had to fast (which, at that time, meant no bottles) for a period of time before the MRI was done.  The whole thing took a whole morning - arriving at the hospital at its earliest opening (some tortuous time like 6 or 7 am, and my mom and I drove in from Jacksboro for the appointment), and after he went in around 8 or 9 I didn't see him until after lunch.  I tweeted a lot about it.  Here's a link to a tweet/picture of Hayes in his hospital gown, 10 hours since last bottle and pre-anesthesia.  You can find me on Twitter by my handle @christieandrews .)

What else is the MRI looking at?  We already talked about the pituitary gland.  So next, the corpus callosum.  The corpus callosum is a group of fibers that connect the left and right sides of the brain.  These fibers allow the sides to 'talk' to each other.  Here's something completely mind-baffling about the corpus callosum: it can be completely missing and you might never know.  Some people with absent corpus callosums go on to college: some with partial loss of the same section of the brain have significant cognitive and motor impairments.  When the corpus callosum is thin, malformed, partially or completely missing, it is called agenesis of the corpus callosum.  (For more information about the corpus callosum, talk to your neurologist and visit this site.  A wonderful organization exists called the National Organization for Disorders of the Corpus Callosum, but unfortunately its website is temporarily down.)

Attached to the corpus callosum is the septum pellucidum, which is a thin membrane that runs to another part of the brain.  A condition often associated with ONH, called SOD (Septo-optic Dysplasia) involves diminished optic nerves, pituitary gland dysfunction (hormone problems), and a missing septum pellucidum.  For more information about SOD, talk to your ophthalmologist, endocrinologist, and/or neurologist and click here. 

I took the call regarding Hayes' MRI results on April 24, 2013.  As I'm writing this, that's only 11 days less than a year ago.  Hayes HAS a corpus callosum, but because he was six months old at the time of his MRI, his brain was six-months-old-tiny, as was his corpus callosum.  It's hard to tell, at that size, if a corpus callosum is malformed.  Hayes has not been diagnosed with SOD, as he doesn't seem to be 'missing' any brain parts and he has yet to have any endocrine issues.  Since his MRI, I've been wondering if his corpus callosum could be linked to some of the motor problems/delays he has, which you'll learn about later.  If your child has been diagnosed with SOD (or ONH), I would highly, highly recommend joining the Facebook group called 'Parents of Children with Optic Nerve Hypoplasia (ONH) / and Septo-Optic Dysplasia (SOD)'.)

Alright.  So.  We know that an ophthalmologist will refer a patient with ONH to an endocrinologist, and hopefully order an MRI (and it's not just to spend money; we understand why.).  Who do we discuss the MRI results with (aside from the endocrinologist... and the ophthalmologist.... and your family doctor/general practitioner/pediatrician...)?  We go to the neurologist.  A neurologist is doctor specializing in disorders of the nervous system, aka the brain.  And, obviously, ONH is a disorder of the brain.  The neurologist will (should) review the MRI results with you in detail.  She should show parents the MRI itself, discuss the findings in each targeted area, and explain what those findings mean.  A neurologist will be the doctor contacted in case of seizure activity, since that can be and is associated with ONH.  If the MRI results are inconclusive for any reason, the neurologist will refer you to other specialists.  (We'll discuss that later.)

I like our neurologist as a human and as a professional.  I really just haven't learned anything from our appointments with him.  He showed us Hayes' MRI results (pretty cool) and is willing to answer my ridiculous please-predict-the-future questions, but because Hayes has some other things going on that aren't explained by his MRI, he's referred us to other doctors.  We check in with our neurologist every six months to discuss any changes in behavior, monitor for signs of seizure activity, and keep track of his development.  The neurologist was the one who FINALLY said 'hypotonia' out loud for me, and is the one who is most concerned about his global developmental delays (which means delays in cognitive, speech, and gross/fine motor skills).

And from this point?  Rinse, lather, repeat.  And adjust as your preferred brand of shampoo is renamed, discontinued, or new and improved.  Because this is the medical community.

So, a recapitulation of post-ONH diagnosis and the 'D-team' assembly. (D is for Doctor, not performance.*  Hopefully.)

ONH diagnois (most likely via the ophthalmologist) then

• Endocrinologist
• hormone tests
• Neurologist
• MRI

Everything I Know Series

What IS Optic Nerve Hypoplasia - Part 1

What IS Optic Nerve Hypoplasia - Part 2 (you are here)

• LEGEND
• Medical information / New Terms
• Personal Andrews information
• Medical specialists
• Therapy / Government Programs
• Really important information
• and links I think you should visit always look like this

If all this helps just one person, I will feel incredibly accomplished.  It's a lot of typing if it doesn't.  :-)  I'm going to condition you to expect a really cute Hayes picture at the end of each installment, so here:

What?  Stop it, I know.  Hayes and Koby catching a snooze after a long weekend.  Hayes is smiling in his sleep.

* Remember, you can fire anybody who isn't up to snuff.  You can always question, challenge, and ask for clarification.  Above all, if you aren't satisfied, you can find another doctor (therapist/case manager/etc.)

What IS Optic Nerve Hypoplasia? - Everything I Know Part 1 -

It's come to my attention that everyone who reads the blog knows something's up with Hayes.  A little over half know that he has a neurological condition (a congenital birth defect) called optic nerve hypoplasia (ONH).  Less know, however, what that really means and entails.  And a few know there's some other stuff going on too; things that no one can really describe well or explain.

I think that sometimes even really, really close loved ones can feel uncomfortable when asking parents whose children have atypical development to explain, in detail, what's going on and why.  And so, they don't*.

I also know that I have read ... a lot... of information (printed and online) about optic nerve hypoplasia; I still Google it sometimes to see if anything new comes up.  I know how it feels to be a frightened mother looking to educate myself on something I'd never heard of until it affected my baby.

SO I want to do an exhaustive post (series) that covers everything that we know about ONH because of Hayes.  Please keep in mind that I am neither a doctor nor a pediatric therapist, and I am describing our family's experiences and decisions regarding this condition.  I'll post medical information, signs, and links I consider to be useful resources.

Optic nerve hypoplasia is a congenital (before birth) neurological (brain) condition resulting in varying degrees of vision loss and can be associated with other disorders and conditions.  Hypoplasia means 'under-developed', and so the name of the condition itself basically describes the fact that the optic nerves were malformed as the baby's brain developed during pregnancy.  The optic nerves are the nerves that connect the eyes to the brain.  There are no known causes of ONH, but studies have linked the usage of drugs, young maternal age, primaparity (first pregnancy), and low maternal weight gain to the condition.  It is not known to be a hereditary condition and is not currently linked specifically to any chromosomal malformations.

When a person has optic nerve hypoplasia, it can affect one (unilateral) or both (bilateral) eyes, and the development can be moderately to severely under-developed.  For example, one person with ONH may have optic nerves that are only slightly smaller than the typically developed person's, while another may have optic nerves that are almost completely diminished.  Obviously, this means that even with the same medical condition, vision loss can range from near to normal acuity (what we call "20/20") to no light perception, meaning that the brain does not perceive the image of light through the eyes.

Every ophthalmology appointment/MRI result has indicated to us that Hayes's optic nerves, while smaller than average, are not markedly underdeveloped.  Unfortunately, as he is still unable to talk, we are not sure of just how much/well he is able to see.

It is important to remember that even with a bilateral ONH diagnosis that the brain will adapt to the under-developed optic nerves.  And so while the optic nerves will not themselves repair or grow stronger, the brain can learn to read their signals better over time, often until the ages of three to five.

This is also why it is important to monitor the health and function of the eyes.  ONH is sometimes associated with strabismus (eye crossing) and nystagmus (eye shaking).  In the case of strabismus, if the eyes are crossed for a long period of time, the brain will eventually 'shut off' the signals it receives from one of the eyes to cancel the 'double vision' effect.  (This is called amblyopia.  Read more about it here.)  Treatment can be consulted with your ophthalmologist and generally consists of patching either eye or undergoing strabismus corrective surgery. (For more information on strabismus, talk to your child's ophthalmologist and click here.)

It was because of strabismus that we were initially referred to a pediatric ophthalmologist by our family physician after Hayes's four month check up, and in turn it was the ophthalmologist who first diagnosed Hayes with optic nerve hypoplasia.  Hayes had the strabismus corrective surgery in July.  His eyes have healed nicely and do not cross as frequently.  Because both of his eyes have always seemed to cross equally, rather than one or the other, our doctor has never recommended patching, and for this reason I am less comfortable giving extensive information on patching.  (For more information on patching as an aid for eye alignment and acuity, talk to your child's ophthalmologist and click here.)

Nystagmus often occurs in people with ONH, and it means that the eyes move quickly, or 'bounce' in different motions, like up and down or side to side.  Interestingly, people with ONH can find their 'null point, which is an angle at which they can look at things without having their eyes move constantly.  (For more information on nystagmus, talk to your child's ophthalmologist and click here.)

We have been on the watch to see if Hayes seems to prefer looking at objects or people from certain angles, which may indicate that he has found a 'null point'.  There is actually a surgical procedure that can 'move' a person's null point.  For example, it would be much more convenient if the null point could be found when the eyes were looking straight forward, instead of looking at things obliquely from a wide angle.  So far, we have not noticed Hayes preferring any such positioning.  

We have noticed him 'nodding' quite a bit, and at this last appointment, the ophthalmologist referenced a condition called spasmus nutans that is associated with nystagmus, although not necessarily with ONH.  Spasmus nutans is characterized by nystagmus and head movements, such as nodding.  It generally manifests during infancy and early childhood, but generally resolves itself by ages 3-4.  Because the signs can also be misread as spasmus nutans when they can actually be signs of problems such as brain tumors, doctors will often order MRI scans to be done.  Since Hayes has already had this done with no concerns coming up, our doctor felt comfortable ruling that out.  (For more information about spasmus nutans, talk to your child's ophthalmologist and click here.)


Because no one likes to scroll forever, this wraps up the first part of what I hope will be an informative, frequently updated series about optic nerve hypoplasia and hypotonia (in broad scope) and our journey with Hayes (in specific detail).  Stay tuned for: associated conditions, posts on early childhood intervention and how to get it, hypotonia, global developmental delay, genetics, and most likely more.

Everything I Know Series

What IS Optic Nerve Hypoplasia - Part 1 (you are here)

What IS Optic Nerve Hypoplasia - Part 2 

• LEGEND
• Medical information / New Terms
• Personal Andrews information
• Medical specialists
• Therapy / Government Programs
• Really important information
• and links I think you should visit always look like this

But here's your reward for making it this far.  Hayes says, "I bet you thought she'd never stop talking!"

*It's okay to ask.  : )

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 ...

shrug.

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

MRI Results

I took the call at work today.

See, I THOUGHT it was a call from Cook Childrens anyway... I conveniently left my school-issued iPad there when we had our MRI appointment last Friday.  That's right.

So I took the call in class, my twelve three-to-five-year-old children waiting (not so) patiently and (not so) quietly as my aide struggled to give them their lunches without my help, and I was startled to hear that the person on the other end of the line was ready to give me MRI test results for Hayes Andrews.

Let's pause for a moment and think about that job.  And I thought mine was hard.

He went on to let me know that the optic nerve looked good - no significant underdevelopment at all.  In fact, he kept going on about it so much I made him stop and I asked, "So.... he does have optic nerve hypoplasia, right?"  He does.  But the optic nerve ISN'T super small.  Which is good news.

Great news.

Miraculous news.

My baby can see.

He did report on another finding, however.  Hayes' corpus callosum appears to be smaller than normal.  In my "OHMYGOSHHEPROBABLYWON'TBEBLIND" euphoria, I didn't stop and ask for the exact comparison between Hayes' corpus callosum and the average 5 month old baby's.  But I don't regret it.  It was a good call, a good moment, an answered prayer.  Correction: answered prayers.  Because I know Hayes Andrews has been lifted up by countless people over the last few weeks and our family is incredibly grateful and humbled.

But anyway.  If you haven't tabbed over and Googled 'corpus callosum' yet, here's what you're missing.

The corpus callosum is a big band of fibers connecting the right and left hemispheres of the brain.  Essentially, they help the two halves 'talk' to each other.  The two halves being able to communicate like this is vital for every action the body needs - from basic movement to critical thinking skills.  Disorders of the corpus callosum can range from complete agenesis (absence) to partial development to abnormal development.  These disorders can affect motor skills, critical thinking skills, social adeptness and other things.

I'm praising God today because I feel like we've been blessed.  I told my mom while we were at the appointment for Hayes' MRI that I had a peace about Hayes, and I meant it.  The peace doesn't mean I'm not taking this seriously, it doesn't mean that I don't acknowledge that what we're dealing with is a 'big deal'.  I've just realized that nothing a doctor tells me can utterly devastate me because NO ONE knows my son more than my Lord.  Humans can't even write all there is to know about optic nerve hypoplasia.  I'm guessing now that not one doctor on this Earth could tell me precisely what caused my son's optic nerve and corpus callosum to develop in the ways they did.  But God can.  Not one doctor can tell me where my son will be in six months.  But my God can. 

There isn't a human on this planet who can look at a picture of my son's brain (amazing though it is that we can acquire one) and tell me where he will be at ten years old or what he will have accomplished.  But my God can.

Hayes Brandon was designed by the Creator with a purpose and he was delicately, intricately, beautifully and wonderfully made by a loving Father.  No one, despite their degrees or accolades or accomplishments, will be able to tell me beyond a shadow of a doubt, anything about his future.  No one can rule out what he may or may not be.

My God is a Healer and maybe he won't heal Hayes, but he's healing me.

This blog will not become a site dedicated to optic nerve hypoplasia.  It won't become a site about the intricacies of the corpus callosum.  Because my life isn't just about that, and neither is Hayes'.  Hayes is more than the way his brain developed.  Frankly, it would be exhausting and selfish to let the magnitude of this condition overwhelm me daily.  It's not my job to worry today about whether or not Hayes will be able to hit a ball off a tee or drive a girl to the Prom.  Today I'm thinking about whether or not it's been four hours since he last ate, if his feet are cold, if Knox got enough to eat at dinner and whether or not Koby felt like I appreciated all he did for me today.  So if my next post is a petty one about, say, the evils of cell phone carrier companies, you'll know that I'm not neglecting or ignoring the fact that my son has a brain disorder.  I'm just still a human being.