Wednesday, April 24, 2013

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. 

Friday, April 12, 2013

This is Friday Night

This week has been rough.

Nothing's gone wrong, per se.  Aside from my children conspiring against Koby and me and planning our demise due to lack of sleep, we're fine. 

I've just realized that I'm one knee scrape away from a meltdown.

Knox and Hayes are both well (ish) but I've come to notice that my holding-it-together-ness can be broken apart at the tiniest cough, a sight of phlegm, or indeed, a knee scrape.  Earlier this week I thought Knox MAY have had the beginning of a staph infection (turned out to be a little knot leftover from his antibiotic shot a few weeks ago) and I actually thought I might lose my mind over it.  Seconds before finding the panic-inducing bump I was a normal, functioning female.  Post lump, my heart was beating fast and I was near Biblical mourning status.  Tearing of clothing, sprinkling of ashes, weeping and gnashing of teeth.  The works.  (I recovered in about 15 minutes after remembering the shot.  Awesome.  Didn't feel stupid at all.)

Hayes has been having some party time with his friend Nebulizer again to ward off any lung infections that might cause him to re-reschedule his MRI.  In similar panicky fashion, every time he coughs I see him as a five year old who hasn't been able to have his MRI yet because he can't go six full weeks without getting sick.  (Though he's currently listening to Ride of the Valkyries and kicking like a maniac, so I'd say he's fine.)

So, Hayes update:

MRI : rescheduled for April 19 due to Hayes' recent RSV.
ECI evaluation: April 16. (Explanation to follow.)

Keep prayin', y'all.

And he's five months old.  Hayes is getting stronger every day and is holding his head up more frequently and steadily.  He's still not sitting well but I know he'll keep making progress at his own pace.  The ladies at the daycare where I work love watching him get excited about the toys they put across his crib for him to see - they thing he's making progress too.  He's making better eye contact and his Lovie swears he's a little trickster and I agree!  He still loves to look at lights.  Next week he'll be evaluated by some professionals from the North Texas Rehabilitation Center for Early Childhood Intervention services.  I'm really excited to learn about the exercises, therapy, etc. that we'll be able to get for Hayes. 

But I really struggled with frustration this week because of related issues.  As a teacher who's sat in her fair share of ARD meetings (pardon my teacher-speak), I know firsthand that one would be hard-pressed to find a fiercer love than that of a parent.  Parents will be downright asses about their kids.  All is fair in love and free appropriate public education.  (Teachers, laugh with me.)  But really, I get it.  As a logical human, I know that Hayes Brandon Andrews, Texan, age 5 months, is not a likely priority to any other person not related to him.  I know that.

But I was still frustrated when I felt like I had to repeatedly call to make sure his paperwork was being sped along to its final destination to acquire these services.  These services that will HELP MY BABY BE ABLE TO SEE AND USE HIS MUSCLES, I emphasized in my mind.  I kept fighting this outrageous anger as I imagined someone neglecting his case information.  I realized that I, one who hates to be the 'squeaky wheel', am completely capable of being the 'full-scale tire blowout on the interstate while doing 75 in a 2000 Ford Explorer with Firestone tires' when it comes to my kids.  And I know that this side of crazy is lurking in any mother, in any parent, at any time.  My crazy just seems to be bobbing a bit closer to the surface these days.

Like I said, one knee scrape this side of a meltdown. 

We have another child too, we didn't forget.  His name is Knox and he is something else.  Things he's doing lately that I love or will love to remember (parents, you know what I mean):

  • When I kiss him all over his face he giggles and says "Moooooore??".  We do this over and over and over again.  Often.
  • When he would like to direct my path, he gets behind me (or anyone so silly as to be sitting when they should be doing his bidding) and pushes on my back with all his strength and says "Pooooooosh" (push)
  • He loves to say "No, don't" and "Stop it"
  • He calls strawberries 'strawbies' or 'chobbies' and the look of pure joy and ecstatic anticipation on his face as I hold one in front of his eyes is worth digging up the yard and planting a ginormous strawberry patch.
  • He sported the very closest hairstyle to a mullet he'll ever have today as (in my temporary insanity to get him to sleep) I gave him a haircut last night before bedtime.  Knox hates the clippers, so it was short-lived, but I think I may have cut down his nighttime sweating to a mere gallon last night from that alteration alone.
  • He has been off and on about the switch from crib to bed.  Very quickly he developed the at first cute, but then very annoying habit of standing by his bedroom door on the inside and saying "Knockkkkkk, knockkkk" when he wants out.
  • He loves to pray.
  • He is moody.  Or maybe just a toddler.
I won't make this a sap fest and keep going but I want to talk about Knox, too.  He's stepping up to the plate the best any (almost) twenty-one month old can.  He takes care of Hayes when he sees a need - often doing so in the most intuitive way, anticipating his brother's needs in advance.  Sometimes so far in advance that he'll shove a pacifier or bottle in Hayes' mouth while he's still sleeping, but whatever.  I love it because he sees his brother when he looks at Hayes, end of story.  He sees his baby, who needs milk and pacifiers and comfort and Knox wants to play with him.  He doesn't know that Hayes is behind on his gross motor skills.  He doesn't know that his brother can't read his facial expressions.  And yet he sees Hayes in his truest form - a baby brother needing to be loved, needing attention, needing care and Knox wants to give him all those things.  And fist bumps.

Here is Knox, with the unfinished haircut I gave him, talking about his unfinished haircut while getting a bath.

Monday, April 1, 2013

Fools in April

April is here.  April is here!  April is here?

As promised (and under multiple threats) I am here with an update!  Hayes had his first appointment today with his endocrinologist and every thing went well.  I say every thing went well - this seemed mostly like a 'meet and greet', but it definitely felt positive.  Since Hayes is already five months old (tomorrow!), it seems that if there were serious problems with hormone deficiencies, they would have manifested themselves by now (i.e. seizures from low blood sugar, underdeveloped parts and poor growth).  The doctor ordered a gamut of hormone blood tests, answered questions I had, and arranged for a follow-up in four weeks, at which point we'll review both the blood work and the MRI results and come up with a game plan based on what we find.  Our 'game plan' means basically, how often we'll need to assess his hormone levels and whether or not we'll need to begin hormone therapy after we know more about Hayes' condition.

Hayes was super brave and strong during the lab work while the tech took 10 ml of blood (2 tsp).  He hardly cried and I am so proud of him!  He is doing much better with his head control and making progress at his own pace.  My parents were here this weekend (Mom was able to come with me to the endo. appt., thanks God for good timing) and kept remarking in amazement what an AWESOME baby he is.  Seriously, the best.

For inquisitive minds, here are some important upcoming dates for Baby Hayes:

April 9 - MRI
April 29 - Endocrinology Appointment to review hormone/MRI results
June 18 - Vision Check-up

Before I go on, Koby and I want to thank every one for their comments, texts, messages, calls, letters (yes!  people still send mail!), and thoughts over the past few weeks.  We are overwhelmed by your support and in addition to being grateful for our two astounding, amazing, spectacular children, we have been blessed with wonderful family and friends.  I have been encouraged and made wiser by the compassion and advice received from so many who read the blog and it is good for my soul.  Thank you.

-Commercial Break-

So, you may be wondering just why it is that I keep this blog.  Obviously, it's a great (and maybe slightly narcissistic?) way to keep in touch with family and friends for those of us who are more verbose than a Tweet will allow.  (And I can't convince my parents that Twitter is cool, so that's out for them anyways.)  It's a therapeutic outlet for me, a place to gather thoughts and organize them.  A lot of people relayed to me that they appreciate my transparency and I HOPE that one day someone who is struggling with the same things as I am will find these posts encouraging.  That's my prayer, anyway, and it's the boost I need when I feel like I just can't bring myself to be honest about my feelings on something that's challenging or difficult or controversial.

But one foundational purpose of this blog is much more selfish and sad than all of that.  Quite simply, I'd probably forget most of what's happening in our lives at this moment if it weren't for this blog.  (Almost) strangers who read this blog have actually reminded me of things I'd forgotten about that happened in my own life, to me because they read this blog.  It's scary, people.  (Not the strangers, how much I forget and how quickly I do so.)  I blame some of it on the immediacy of our culture - we take in so much information during 24 hours it's wondrous to me that we don't all need 12 hours of sleep to compensate each night.

For instance, right now, Knox is playing with his toys behind me and talking to himself about chickens, and cats, and trains, and unless I take a picture of it and post it on this blog I probably won't remember what this is like.  This blog is like my digital baby book for Knox and Hayes.  (I do keep real ones too.)  But it's also a  marriage book.  And a life book.

Here's what I'll forget about from the Blog Famine of 2012-13 if I don't post about it here:


Melissa graduated from UT Tyler in mid-December with her Master's in Business Administration.  Knox was sick.

Christmas Eve morning in Graham.

About two months post-Christmas Judson proposed to Elizabeth... so Koby and I are getting a brother in law and Knox and Hayes are getting an UNCLE!

Christmas Eve in Throckmorton - Knox was not sick and we discovered just how much he will do for attention.

Hayes' first Christmas.

White Christmas Day in Bryson.

Day after Christmas in Austin.

Melissa and I on New Year's Eve day at her studio apartment in Deep Ellum.  She will kill me for putting this on the blog but isn't she pretty without makeup?

Married friends Clay and Belinda in this picture - Baby Maybelin is here too but not many people knew that yet!

Koby and I ate dinner with Clay and Belinda, then went back to Melissa's apartment and watched movies.  I fell asleep before 11:00 pm.  Happy New Year.

On New Year's Day we flew to Vegas.  I think this is the first night - I'm by the Fountains at the Bellagio.

Our hotel/casino in Vegas where we lost about $25 on the slot machines.  Apparently we know nothing about gambling.

Back in Bryson.  Knox has the flu in this picture, but we don't know it yet. 

Can't you tell?  Also, I don't know why I let him wear that shirt.

Playing hooky from school.  Not really.  Knox had both types of the flu (A and B) and I got it too, so we had to stay home for a few days.


I forced this mural activity upon my son to make self-proclaimed world's cutest Valentine cards.


Knox ate an Oreo.


A week before Spring Break, Knox came down with strep throat and an ear infection.  The Friday before Spring Break we found out Hayes had RSV at his four months checkup (a few hours after this photo was taken). Koby and I both got a 12 hour stomach flu on the Monday of Spring Break.  It was a weird few weeks.

A few weeks after this Knox got sick again. No idea what it was that time.

Over Spring Break (once every one was well) we took the boys to the Abilene Zoo.  First zoo trip!

And now we're caught up!

Are your eyes bleeding?  I will try and never let this happen again, for all our sakes. 

Keep praying for Hayes! :-)