originally of apples & oatmeal...re-titled as Trevy in a Nutshell

re-posted from my guest appearance over at Team Aidan
March 2012

I should establish up front that I have tendency to take the scenic route.  If you’re interested in gutting it out with me you might want to pause here so you can grab a cuppa joe.  A box of Kleenex wouldn’t hurt either.

:: wink ::  

Also, one quick thing before we take the plunge.  Though I’ll keep slipping into the first person “I did this” or “I did that” – the truth is – I’m not on this journey alone. My mom is not able to contribute as much recently due to health issues, but during the most dire times she was available at the drop of hat to help me.  In fact, Toby and Bristel lived with my parents while we spent almost a month in Detroit. I’m also connected with other IS families who are my virtual safety net and sounding board. We have support from our local community too – friends gave hotel points, air miles, money, many a ride to & from various sports for the big kids which allowed them to have a little slice of “normal” during some very “abnormal” stretches and even delivered meals when we finally came home after surgery. We have a plethora of prayer warrior support. Also, I married good. Jonathan is an amazingly tender husband. He supports me in many, many ways but a biggie has been taking night duty (Trevor would wake 5-10 times a night with clusters of seizures) which allowed me to have rest so I could face whatever battles the next day might bring. And of course, I have three amazing children who inspire me daily to love harder than I ever thought possible.

Okay then.

Take a breath.

Pull a tissue.

Cause here we go…

It so happens a new (to me) mom was at our weekly Homeschool Ice Skate.  And as we were chatting The Story came up.  To get the full effect of The Story one must imagine melodramatic music floating and weaving around the words.  As it all came tumble bumbling out of me (minus the music)…I was struck by the absurdity that is The Story.  Otherwise known as our life.  If I weren’t actually living it…I would totally be rolling my eyes at the crazy lady telling it.  Thoroughly convinced that she were an embellishing-spot-light-loving-drama queen.  Or maybe she has a nasty case of Munchausen by proxy.  But that’s just it.  Every crazy unbelievable thing I said is true.  Without a twitch of embellishment.  If anything I try to downplay the drama so I don’t scare potential mommy friends off.  I don’t know about you…but I find that The Story has a way of freaking people out.  Like it’s catchy.  Or that I’m somehow super human which makes me un-relate-to-able.  But these other moms were just listening.  A little slack jawed.  But listening.  And I couldn’t help myself – the irony and absurdity tickled my funny bone.  I started (inappropriately, I’m sure) laughing.

Like, double over.  Hold my side.  Belt it out.  Laughing.

The Story sounds so entirely fictional.

NY Times Bestseller wanna be fantasy.  Jodi Picoult don’t you dare get any ideas!

Even if it does read like Hollywood B movie material.

I mean…we have The Bush Factor.  My husband and I, along with our two oldest kiddos, were missionaries once upon a time.  Trevy too – but he was just a baby bump at the time. A time that feels like another life altogether but was really just a handful of years ago.  We still carry on rusty Swahili conversations with each other just because we can.  And oh but do we have stories to tell.  Malaria in the middle of nowhere filled tales.  Tales that draw Romantic hearts to foreign countries.  Stories that are fuzzy around the edges now.  Because they happened a life time ago.

Before Trevor.

Well, really…

before seizures.

Not the seizures that most people are familiar with.  Not the kind Hollywood is embracing lately.  Not the kind your favorite Aunt Sally has.  Unless she has the catastrophic kind.

I’m not trying to offend or diminish controllable epilepsy.  Any life with seizures brings with it stress.

But catastrophic epilepsy is another breed altogether.

We’re talking seizures on steroids.

Seizures that you don’t ever want to know exist.  And when you do, you hug your healthy children that much the tighter.  And if you already do, your heart is knitting with each word you read.

At seven months old Trevor had his first cluster of Infantile Spasms.

We were literally two weeks from returning to Tanzania.  Luggage half packed.  Vaccinations and passports - all systems go.  In fact, Jonathan was in Delaware loading a container with supplies we intended to use during our second term as (what we believed would be) career missionaries.  I stayed behind in Rhode Island with my parents.  Schlepping three rugrats across several states just didn’t sound fun.  If you’ve ever driven I-95 through NYC - you get it.  Also, I needed to take the kids for their flu shots and show the pediatrician these weird movements Trevor kept doing.  Jonathan was the brilliant one – he suggested I take that video clip the next time an “episode” happened.  I had tried verbally explaining what I was seeing – the doctor thought it was reflux.  A common misdiagnosis.  He told me to try a soy based formula.  Which, of course, did not help.  Trevor was becoming increasingly cranky during the day and sleeplessly irate at night.  Symptoms.  The first cluster we noticed was on a Monday.  By Wednesday I was a basket case.  I knew something was wrong – just not what.  How in a million years could I have known?

It took three phone calls to the pediatrician.  The first two were toned down because I didn’t want to sound like a crazy mommy.  The third time – the mirage no longer mattered  – I told the doctor he needed to see me now.  That I’m not a new mom and something is desperately wrong.

He agreed to see me after hours.

I could tell.  The way the lines on his face shifted as he watched the video clip.  He asked if he could show it to a fellow doctor because in his 20 years of practice he’d never diagnosed a child with what he was suspecting.  My stomach was in my toes.  Sometimes I try and picture myself sitting there.  All pins and needles.  And innocence.  I was such a different girl then.  Less serious than I am now.  More carefree.  Not as cranky.  Skinnier too.  I knew something was wrong – but I never imagined just how much our life was about to change.  Never.  Because until you face them, you can’t imagine the monsters hiding behind the name tag: Rare Disease.  When he came back in the room I teased,

“Just promise me it’s not Tourettes!” 

His smile was probably tighter than I remember noticing when he assured me it wasn’t Tourettes.

“Well then, promise me I’m not missing my flight back to Africa in two weeks.  Because as you can see, I really need to work on my tan…”

Humor is my nervous tic.

    The rain was cats and dogs (I warned you – B movie material).  It was late – six or seven.  When I called Jonathan.  He sounded busy and distracted because he was.  There is an art and madness to loading a container.  Making use of every crevice.  I was barely holding back the flood when I asked him…

“Do you still believe God has a Plan in all things?”

I knew what his response would be even as I told him he needed to come home.  Now. 

And he did.  He left the packing to others and drove through the rain.  Not stopping until he was with me.  It was sometime after midnight before we were holding each other.  I had already surfed more medical speak than any parent ever wants to know could sneak up and engulf their child.

Those beginning weeks are blurry now.  So much life has flowed since…eroding away bits of the past.  I know Trevor had an EEG which confirmed the diagnosis.  I know our dreams of bronzing away our life in Africa were shattered. 

(this was actually after he’d started treatment – note the ACTH puffy cheeks - but was the earliest EEG picture I have)

I also remember our insurance denied Trevor the frontline treatment.  There are only a few and ACTH was the most promising.  A handful of months before Trevy was diagnosed, a company (Questcor) who had not developed but had purchased the drug (Acthar) was successfully given the go-ahead to change the price point by utilizing the Orphan Drug Act.

Overnight the price increased from approximately $1,500 (just put in on my credit card) per vial to $23,000 (now we’re talking a home mortgage) per vial.

Which is another story altogether - I testified against Questcor before the Joint Economic Committee the summer of 2008.

Trevor’s course recommendation was for 5 vials.  Possibly more.

We spent over a week fighting with our insurance company for coverage.  At one point they even stopped shipment.  They also threatened to not cover any costs incurred from side effects should we move forward without approval.  It was hell.  Emotional hades.  Absolutely gutted and helplessly holding our broken, seizure saturated infant.  Knowing that each seizure was stealing his cognitive and physical development.  Unable to access the drug which the doctors were telling us could possibly save his life. 

We were a wreck.

Ultimately, and after hundreds of unnecessary seizures and emotional turmoil, we finally had the treatment in hand.  Liquid Gold, Jonathan called it.  I thought Hope in a Syringe.  Acthar is a steroid gel which is injected into muscle mass – typically the thigh.  I delegated the needle handling to Jonathan.  Because I’m a wimp.  He always said he was more afraid of dropping the $5,000 syringe than actually giving the injection. 

(in the small boxes up front are two 5ml vials)

There is no describing how it feels to swaddle your baby as tight as you can.  Leaving one little thigh exposed before laying your body over his bitty one.  The goal being - eliminate as much of the struggle as possible.  I would close my eyes and hold my breath until I heard the scream.  The needle is so very big.  And the gel so very thick.  Jonathan says it took more force than he was prepared to use.  It goes against every paternal instinct.  Your heart hardens over time…but that first injection had everyone (home health nurse included) in tears.  We had to give him one injection daily for 5 weeks. 

Four shots in, Trevor was seizure free.

He did experience some known side effects including crankies, weight gain…

(he earned his nick name Heavy Trevy)

along with high blood pressure which required medication to keep controlled.  Try explaining to the pharmacist why your 7 month old needs Enalapril.

But he was seizure free.  The benefit outweighed the risk.

I wish that were the end of the story.

We did go on to have several months of seizure freedom.  During those months Trevor continued to make developmental progress in spite of his abnormal EEG.  Which remained intermittently spikey over the left side.  I never had a peace settle over me that our journey was over.  I always had this hunted feeling.  Like we were being stalked by the Seizure Monster.  But our neurologists insisted he was on a positive path – so I set my heart towards trying to believe them.  Speech was our biggest tangible concern back then.  He never seemed to respond to language – Early Intervention assured us speech delay was normal with boys.  Of course, Trevor was my 3rd child so I had some experience with Language Development.  Toby and Bristel were early bloomers.  Both speaking in sentences before they were 2.  I wasn’t convinced Trevor was just going to be my pokey talker.

I was right.

The majority of his subclinical seizure activity was occurring throughout his left hemisphere but appeared to primarily be originating in the temporal lobe region.  The left hemisphere is responsible for speech.  When he was 13 months old, a Boston Children’s neurologist brought up the topic of removing his left temporal lobe if speech continued to be significantly delayed.  He said as long as the “broken brain” was in there it would try to do the job and would never be successful.  If we removed it – it would allow the miracle of rewiring to the healthy right brain to occur.  The younger the patient – the better the outcome.  The idea of brain surgery wasn’t new to me.  I poured hours into research and various support forums and had already learned of several IS children who’d had portions of their brain removed.  Many of them in Detroit with Dr. Chugani (whom I fondly call Dr. Rockstar).  It was radical.  But so is catastrophic epilepsy.

When he was 17 months old our worst nightmare became reality -

his Infantile Spasms relapsed.   

The next year plus some was immersed in seizures and med trials.  Testing this.  Trying that.  Cocktailing these.  Titering those.  Nothing worked.  His EEG was no longer only spikey over the left brain.  It was a generalized (involving both sides of the brain) hypsarrhythmia (specific EEG pattern associated with Infantile Spasms) mess.  The spiking on the screen looked like a toddler scored a box of crayons.

(EEG with hypsarrhythmia)

When it should have been closer to this…

(healthy normal EEG of a baby)

All that disorganized chaos reflected the electrical storm waging under the crop of curls and super cute face.  So many seizures.  Hundreds of uncountable seizures.  Every single day.  From the time he woke up until the time he went to sleep.  He was a walking seizure.  He would cluster all day long.  Each cluster could last from 5 – 30 minutes and involve as many as hundreds of back to back seizures.  I stopped trying to track them.  It was exhausting.  Yet rest did not bring him respite.  Infantile Spasms is most aggressive when the brain tries to rest.  Sleep is so important to growing babies because this is when the brain takes all the information it has processed throughout the day and organizes it.  Learning cements during sleep.  This aggressive increase in seizure activity during that precious learning time arrests development.  And causes developmental regression.  A growing brain cannot sustain perpetual insult without resulting in arrest and eventually loss of function.  We watched Trevor’s global development slip from a month-ish behind his peers to significant delay.  When he was 28 months old, an evaluation placed him globally functioning around 10 months.  His body was growing bigger but he was developmentally frozen at the point his spasms relapsed.

We had exhausted medications.  Sure there were more to try.  But the likelihood of being effective was nil to none.

We had reached the desperation point.

Which I guess, is where you need to be when you finally decide to passionately pursue surgical intervention.  I had flirted with Dr. Chugani in the past and did so again.  Because I needed Hope.  He is the rare breed of doctor who cares enough to offer himself via email to parents of children with catastrophic epilepsy.  There are many, many parents whose children are not his patients and yet he takes the time to answer their questions.  Offer guidance.  On this very dark, murky road.  Jonathan’s dad passed away from Pancreatic Cancer during this time.  My parents kept the kids so we could attend the funeral together.  It was shortly after the ceremony that my cell phone vibrated.  Chugani was on the other end.  And I can’t deny, it felt like a sign.  I was already eyes weepy and hands shaky as he expressed feeling that Trevor could be a surgical candidate. Based on my shared data and the single test (a PET scan) he studied for me pro bono.   Having not actually preformed any testing himself – it was just his guess. 

But it was enough.  To get my hopes up.

It’s just that Detroit is an awfully long way from Rhode Island.

So we decided to pursue surgery locally first.  The best choice was Boston Children’s.

Where we were sorely disappointed.  The neurologist we were referred to wouldn’t even present Trevor’s case to the surgical board.  He said his seizures were generalized and that his EEG was trending towards Lennox-Gastaut Syndrome (LGS).  This was the same guy who once mentioned removing a lobe.  But that was before the relapse.  Now, he was telling us the most we could hope for was some form of seizure control but that Trevor would never be seizure free and would likely never talk.

It’s not even that we were surprised.  Or that any of the information was new. 

It’s just that the amount of emotional energy it takes just to survive these meetings is astronomical.  All of the hope we’d poured into pushing for surgery – dashed – just like that.  Appointments like these have a tendency to leave me little more than a puddle on the floor.

But that hope.  Dr. Chugani had breathed that hope in my heart.  And I knew I had to pick up the shattered pieces and move forward.  I knew I didn’t want to waste any more time.  “The younger they are – the better the outcome” echoed inside my head at all times.  Which meant it was time to get serious and schedule an appointment with Chugani himself.  I also knew it wasn’t going to be easy to convince our insurance to approve this way out of state & network facility and neurologist.  Especially, when our local hospital clearly disagreed.  And in fact, Trevor’s primary neurologist quietly referred us (meaning, she didn’t run it by her superiors) to prevent any further delays or barriers. 

And it was no easy feat.  I lost track of the hours I spent on the phone.  The number of letters written.  Arguments made.  Sleep lost.  Pounds gained.  Tears shed.

Somewhere over those months my passion for surgery morphed.  In the beginning, it was entirely (selfishly) about the cognitive benefits it could bring him.  We had already watched him make developmental progress before - when the seizures were controlled.  But as time flowed on,  it became more about giving him a better quality of life.  I would have given anything to stop those damn seizures from attacking him.  Saturating him.  Slowly stealing him way. 

And after months of advocating…our insurance agreed to let us pursue surgery with Dr. Chugani’s Dream Team.

Toby’s (my oldest) baseball coach donated his air & hotel points for our surgical consult flight to Detroit.  I won’t go into all the gory details…but trust me…the trip was filled with B-movie drama of it’s own including severe weather almost causing us to miss our connection!  I can’t resist sharing one particular incident.  We had successfully secured seats on THE LAST flight from Philly to Detroit and some yahoos were trying to guilt trip us into giving them up.  “But we’re headed to a funeral”, they said.  “We’re en route to see if a neurosurgeon will agree to remove half of this beautiful little two year old boy’s brain as a radical last measure to control the hundreds of seizures he survives on a daily basis”, we responded.  They moved along and we made it to Detroit late that night.  We returned home even more weary and promise-less.  Later learning there was much debate over Trevor’s case when the surgical board met.  Because Trevor has no tangible findings on his MRI along with his generalized (meaning seizures occurring in both hemispheres of the brain) EEG – it was not a clear cut decision.  Dr. Chugani argued his case – and finally persuaded the team.  He would later tell us during post-op rounds that he couldn’t let a child continue to have 100s of daily seizures if there was even a small chance.

August 17th, 2009 was the day we learned that Trevor was a candidate for radical brain surgery (a left subtotal hemispherectomy with MST to motor cortex) with Team Detroit.

I’m not superstitious or anything, but I had stopped cutting Trevy’s hair when we made the decision to chase surgical intervention.  Over the months he’d grown a mop of beautiful surfer’s curls. 

(snapped on the day we were waiting to hear about the Surgical Team’s decision)

Just a handful of weeks after our consult appointment, the OR nurses took turns running their fingers through his beautiful surfer curls before shaving most of them off.  And sweetly saved a baggie for us.

There are so many details and emotions to share about those Nightmare Miracle days…weeks.  Too many, really.

  (our first cuddle after his Hemi)

A friend recently asked me how we made the decision to have half of his brain removed.

I don’t know that I can adequately answer that question.  At least not in a way that someone who hasn’t walked this road would be able to wrap her heart around.  Certainly, everything I’ve shared already played a role in leading us towards surgery.  It was truly the final resort (though, I personally believe neurologists treating catastrophic epilepsies should consider surgery more aggressively – rather than forcing willing but emotionally exhausted parents to find the strength to push for it).  We were out of viable options.  If surgery wasn’t on the table…our story would be different.  But it was.  And Jonathan and I had made a promise together.  During those early days just after we heard the words Infantile Spasms for the first time.  We held each other and promised that we would always choose the most aggressive treatments, no matter how scary, to give Trevor the best chance.

That doesn’t mean we have an extra supernatural dose of courage.  Or are immune to deep, bone shaking fear.

The same fear that quaked us to the core when we gave him that first injection of Acthar quaked us to the core again when we kissed him goodbye.  And as we held each other weeping and watching his bed roll away to the surgical suite.

(the actual scan of Trevy’s brain post surgery – obviously words added by mommy)

Of course, we’re on the Healing Side now.  As I like to call it.  The surgery is two years behind.  So are Infantile Spasms.  We have watched the Trevy we knew was locked underneath those seizures blossom these past two years.  It’s easier to smile now and relax into knowing we made the right choice.  For Trevy.  Of course, he’s only just about to turn five which means our journey is far from over.  I’m still advocating hard for him.  It’s still exhausting.  I’m still researching and pushing.  I can still be found stress eating.  He still has epilepsy.  Though thankfully more responsive to medications.  We’ve walked down the road a little bit further now.  Some of the “what ifs” have been answered.  Some of the drama already lived. 

People love the idea that he’s such a Miracle.

I love knowing that he has been all along… 

…danielle

******************************

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Trevy, Mommy, Toby, Bristel Christmas Eve 2010

 December 2010
Trevy is 3 1/2 yrs.


I'm a sucky nut-sheller.  Apologies.  If it helps, I often wish I were one of the clever people.  The clever people have the ability to wrap all their thoughts up in two or three paragraphs.  Sometimes even sentences.  Succinct while not losing the wit.  And never go back for a post posting edit.  Or two.  Or three.  Million.      

Yeah.  I'm not one a them.

I suppose I'll have the thicker book someday.  

::smile::  

But, really, it's hard to pare down 8 months worth of conversation.  Plus all the yesterdays  and tomorrows stirred up with it.  Can you believe it's been 8 months since our last neuro appointment?  That's twice as long as it should have been.  Things move at a snail's pace in Bean Town.  We've been waiting since September for Dr. Neuro to get credentialed. 

Dr. Neuro has always been Trevy smitten.  Especially with his eyes.  She loves his expressive eyes.  And has maintained intelligence lies in them.  Somehow I mostly found myself at the doubting end.  It's not that I doubted his intellect.  I never doubted that.  I'm not blind.  I could see it locked in there too.  Sometimes even sparkling to the surface.  When they weren't glazed over by seizures.  Until eventually one could almost be convinced his ability to learn new things was entirely snuffed out by the electrical storm in his head.  But then I think  maybe I didn't give him enough benefit of the Seizure Monster Whooping doubt.  I always gave the Seizure Monster more power than  maybe I should have.  God...sometimes I wish so hard that I could rewind time and do things differently.  I wish I wouldn't have believed the data.  And would have clung to Hope.  I would have demanded more therapy.  Forced his right brain to create new pathways earlier.  I have no idea if it would have worked.  Dr. Boston once grimly educated us that it would not.  That as long as there was broken brain in there it would always try to do the job.  And would never succeed.  But I wish I had tried.  I wish I had challenged that idea.  I wish I had found the balance between Reality...Acceptance...and Hope.  Instead of giving ear to the sisters.  Fear and Sadness.  I was raised to protect my heart.  Prepare for the worst.  So instead...I found myself relieved when therapies were canceled for this reason or that.  Then I didn't have to watch him struggle through clusters all the while believing in my core that it wasn't even really benefiting him anyway.  Especially when 90% of his day was swallowed by seizures. So why bother. 

I am haunted often by the thought...

How many times have I been Trevy's handicap?

::sigh::

But that's history now.  Water under the bridge.  Yesterday.

Today things are much different.  Would to God that I'll not limit his potential ever again.  Would to God I'll choose Hope. 

Today I don't have to wonder if he's able to learn new things.  Today we're witnessing the miracle of Trevy all the time.  Every step he takes that he shouldn't be able to.  A miracle.  Every word he says that he shouldn't be able to.  A miracle.  Every time he responds to my words.  Follows one... sometimes even two. ..step directions.  Miracle...miracle...miracle!  

For a good fifteen minutes our conversation swirled around all the miraculous happening in our house.  And ended with a sigh.  Our eyes sparkling with joy.  The kind of joy that flows from watching a child who shouldn't...do.  Against all odds.  It's a special kind of joy.  One that not everybody has to opportunity to feel.  But the moms and dads who follow Trevy's journey and have watched their babies DO when they SHOULDN'T.  No matter how small the accomplishment may seem from the outside.  The therapists who've worked with those children.  The doctors who've advocated for them.  And all the people who love these little miracles.  These people have felt this special kind of joy.  It's so tangible I swear it has a flavor.  And we basked in it for a few silent seconds.  Tasting it with our hearts.  Savoring it.

Sometimes I even let myself imagine he'll go to college... 

My mouth blurted.  Somehow making it through my protect your heart filter.     

She smiled.  But not with her eyes.  And slowly a heaviness began to creep in.  I could feel my face muscles involuntarily slackening back into their more natural place.  Heavy.  Sad.  Broken.  There is always joy.  And lately, even Peace mingled in.  How can you not have some semblance of joy when you live with a Trevy?  It's just most times burning quietly.  More smoldering than full on flame.  Deep down where things are felt only by me and no one else.  Because despite all the miraculous...there is a significant brokenness.   Trevy is a true paradox.  A tragic miracle.  He is beautiful.  And amazing.  And miraculous.   But he is not what I wished for when I sang to the whirling twirling little bean in my womb.  He is not what I dreamed about when I smiled at Jonathan and asked if we should try for number 3.  This is not the life I imagined.  For me.  For him.     

I know he's a miracle...

I breathed.  She nodded.  Barely.  Trevy sat silent in a chair.  Looking up only when he heard his name.  Or a word here and there that he might have recognized.  Or maybe just because he wanted to see our faces to find comfort.  He may have said two words during the whole of our visit.  I think Dr. Neuro was unconvinced at the generous vocabulary I gave him.  His iPad was perched precariously on his lap. Probably he was doing puzzles.  Daddy poised to catch it should he make a wrong move.

But I want more.

I continued with my next breath.  She assured me of course I did.  I'm his mom.  It's entirely natural.  Healthy.  And the conversation turned to heavier topics.  Our segue into shop talk.   

How's his development?

Well, Dr. Developmental Pedi says he's functioning between 20-22 months.  

And socially?  Does he engage his peers? 

No.  Although he does interact with his siblings and unknown adults sometimes.  

He has quite a limp now?  Do you feel like his mobility is deteriorating? 

Well, actually, yes.  But his school PT insists he's almost moving at age appropriate.  In fact, at our last IEP there was some discussion about not even giving him PT over the summer.

Hogwash...she said with her eyes before going on...   

He clearly needs a PT eval.  His limp is quite noticeable.  And see how he cannot balance on his right leg (she was prompting him to put on his shoes while standing)?  He cannot lift his left foot or even just balance on his right leg because he does not have the muscle tone.  He needs an eval.  

I agree.  I have just spent my energy advocating for the therapies I felt would most benefit his cognition.  I'd rather him talk than walk, I guess.     

How many seizures are you seeing now?

Depends on the week.  Sometimes multiple daily.  Sometimes a handful a week.  

Do they look like the clip you sent?

Sometimes.  We're seeing a variety of seizure types. 

And the meds he's on?

Trileptal...Dilantin...Topomax.  At doses strong enough to knock a horse on her arse. 

When did we last get his labs?

Um.  I couldn't remember and shrugged.  From there we made a plan to schedule a Dr. Ortho evaluation.  An overnight EEG.  Specialized MRI.  Draw labs.  Possibly adjust meds.  Email Dr. Rockstar to keep him in the loop and get his two Trevy cents. And then it was our turn to ask the questions.   

 I shared my ARX theory.  How it's all connected.  Rare genetic anomaly with links to brain malformations.  Which we thought was benign after Toby tested positive with the same mutation.  But that was before brain tissue was removed and studied.  Brain tissue that revealed a brain malformation.  In a child with a rare genetic anomaly linked to Infantile Spasms and brain malformations.  I don't hold a degree in logic.  Math was never my thing.  But even I can see the probability of that being coincidence is slim. 

She agreed with me whole heartily.  And, in fact, was intending to chat about Trevy with a doctor friend hailing from the Brain Malformation Clinic a street over.  Who knew such a beast existed?  I certainly did not. 

I asked her if she could try to hook us up with other families with similar profiles.  Seeing there's a brain malformation clinic and what not close by.  She promised to try.  But emphasized the likelihood of finding a case matching Trevor's is a long shot.  He's one of a kind.  Like many IS babies.  It's not that there aren't other kids out there with whom to compare notes.  It's that either the science wasn't or isn't there yet.  Hello?  CURE!?  Epilepsy Foundation!?  Every other organization allegedly contributing funding for R&D!?   Except you, Questcor.  Keep your filthy money away from my kid.  But to the rest of you. Hello?  Do you see us down here? 

I shared my ADHD suspicion.  She laughed and said, "of course!"  "The two go hand in hand".  We agreed that we were not in a place yet to introduce a medication.  But there are choices into the future.  Should we need them.  Absolutely.  We'll need them!   

And then we were out of questions.  But for one.  The one I always promise I'm never going to ask.  Yet never fail to slip in.  Jonathan and I have this thing we do.  We seek each others eyes out when we're looking for strength.  Or support.  Or whatever it be which we draw from each other.  Our friends tease us about it.  Our eye thing.  I cognitively thought "we're doing the eye thing".  And we were.  He is my rock.  I am his sappy heart.  We're a team.  Team Trevy.  Team Foltzie.  I sucked in a breath and went for it.

And long term prognosis?  

It was her turn to suck in air.  And I swear to God her shoulders drooped just a bit.  Ever so slightly.  But in that subliminal message my heart sank nine floors down.  Right out the spinning doors.  Backwards 3 years.  She has always been filled with hope and optimism when it comes to Trevy.  I'll never forget the first time we met.  3 years and nine floors down ago.  Trevy's seven month old mop of baby hair still goopy from the Infantile Spasms confirming EEG.  We were being whisked to a  room in the neurology clinic.  Infamous for it's lack of space.  Jonathan and I were doing the eye thing.  Trying desperately to hold it together.  But feeling submerged in fear.  Our heart lungs burning for lack of oxygen.  Fear is oppressive like that.  The neurologist leading us to our hole in the wall room bumped into her on our way.  Described in detail our situation.  I can still see her nodding.  She's a tiny thing.  But so confident.  Dripping confidence.  She looked at Trevy.  Raved about his intelligent eyes.  And cute-aliciousness.  He's always been adorable.  She was adamant that we move aggressively.  ACTH needed to be injected ASAP.  My mind's eye was replaying it over and over.  The way she turned to us and said, "And we'll hope for the best".  She doesn't hand out promises.  Because you can't do that to parents holding a child afflicted with a catastrophic disorder.  But she was filled with Hope for Trevor.  Every time she entered our ACTH initiation hospital room she would emphasize "Hope for the best".  For the next two years she would continue to push Hope on us.  When his BEAM Study was scary.  She preached Hope.  When he relapsed.  Hope...she said.  Hope.  Hope.  Hope.  She's a fan of Hope.

So when she took a deep breath.  And her shoulders drooped ever so slightly.  I could feel my heart cracking just a little more.  I didn't realize I had any whole pieces left.   

The data is grim...

She never says that.  Never.  Until today.

The data is grim...

The data is grim...

The data is grim...

It's like the words were things and not just intangibles.  Hateful little demons creeping.  Racing.  They were swirling around me.  Around Jonathan.  Impeding our strength-gaze at each other.  Attacking the healed portions of our hearts.  Death to Hope!  They cried.  Permeating every crevice of the room.  Choking all the tasty special kinda joy right out.  Until our mouths felt bitter.  Our tongues thick.  And our gaze crumbled.  Because there was no strength to be drawn from each other in that moment.       

Dr. Neuro is not a dream crusher.  So she added...

But...

And glanced meaningfully at Trevy.  Reminding us with her eyes that in his own way he is amazing.  Miraculous.  Looking so cute.  So smart.  With the iPad perched on his lap.  He flashed a crooked smile at the three of us.  Taking his time.  Making eye contact with each person.  She noted how good he is with electronics.  And encouraged us to pursue that with his ongoing education.  She even added that some very smart people never even go to college.  Her delayed take on my earlier unfiltered slip.  I shook my head at her sad attempt to be uplifting.  She's so sweet.  It was clear she was just trying to cheer me.  Cheer Jonathan.  Herself.  Trevy didn't need cheering.  He's so happy right now.  And that means something too.  That is a tasty kind of joy too.  

But in many ways, this appointment changed the scope of things.  The day "hope for the best" was layered underneath "the data is grim".  Instead of the other way around.  Like old times.  The way that used to annoy me because I've never been very good at Hope.  And yet now... 

The crazy thing is.  I'm filled with more Hope than ever for Trevy.  Something switched.  In my heart.  Subconsciously.  Because Lord knows I did not suddenly decide to be hopeful.  Drama prone fatalism doesn't die easily.  Something else is to blame for the Hope switch being flicked.  Maybe it's a Spiritual shift.  God gets blamed for all the crap in life.  Maybe He deserves some credit for unexplainable Hope?  Maybe Trevy is to blame.  Maybe his beautiful eyes have finally convinced me to stop handicapping him.  And to let him blossom into whoever he is Supposed to be?  That's the thought that wrapped my heart in warmth yesterday.  When his little hand grabbed mine during the worship portion of church.  I squeezed back in response.  No pudge anymore.  Bony.  A little boy's hand now.  Yet still so little in mine.  He sang at the top of his lungs.  A joyful noise.  In the tongue of angels.  Because it certainly wasn't English.  I'm sure it's part of the growing process.  Growing into his mommy.  The mommy he needs.  Which is hopefully also shaping the mommy the other two need.  The fear and sadness of yesterday fueled my passionate pursuit of his radical rescue measure.  A part of my heart will always be thankful for them.  But maybe we've finally gone as far as those two sisters could take us.  We don't need them anymore.   Let me clarify though.  The Hope I have been feeling lately isn't the "Trevy's going to be healed" kind.  No.  Science, research and my belief that God is not a genie in a bottle tell me that isn't likely.  It's more a Hope that everything is going to be okay.  Even though it isn't.  Hope that Trevy is becoming who he was Created to be.  And so am I.  Hope that this.  Catastrophic epilepsy.  Life plans crushed to smithereens.  Left hemispheres removed.  Brain malformations.  Genetic anomalies.  Beautiful eyes.  Heart shatterings.  Grim data to be digested.   Miracles waiting with Jesus.  Miracles blended with brokenness now. Little boys reaching little hands up.  Tucking in.  Safe.  Warm.  Happy.  Singing at the tops of little lungs.   


This.   


This...is no cosmic accident.   And maybe it's time to Hope...

    "There is a time for everything, and a season for every activity under heaven:  a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance,  a time to scatter stones and a time to gather them, a time to embrace and a time to refrain,  a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace. What does the worker gain from his toil?  I have seen the burden God has laid on men.  He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end."

Ecclesiastes 3:1-11  

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October 2009
Trevy is 30 months old




So much Life has flowed between Trevy's diagnosis and today. Everything leading to this moment. The moment we kissed our son good-bye and entrusted him to the skill and hands of the Neurological Team of Children's Hospital of Michigan.

On October 9, 2009, Trevor underwent a 10 hour surgery to have a procedure known as a subtotal hemispherectomy. The removal of his entire left hemisphere. The Team decided in the OR to spare only his motor/sensory cortex. Although they did not remove it...The Team did preform an MST (slicing to prevent seizures spreading) to reduce the spiking.

To read in more detail navigate to the label cloud located on the right hand side of the screen. There you'll find a complete list of the topics from ACTH to brain surgery.

Thank you for spending some time getting to know my extraordinary son!

June 2009
Trevy is 27 months


Trevy's current Med Sched...

AM

300 mgs Banzel crushed in applesauce
50 mgs Topiramate crushed in applesauce
100 mgs B-6 crushed with maple syrup
1 3-6-9 Omega squeezed into his morning yogurt smoothie


PM

300 mgs Banzel crushed in applesauce
75 mgs Topirmate crushed in applesauce
100 mgs B-6 crushed with maple syrup


Trevy's current Therapies...


Speech Therapy once a week. We're beginning to introduce simple (and modified) Picture Exchanges. I'll share more about this in a different post...cause we're doing some groovy stuff that deserves a post of it's own! Trevor is at a 12-15 month level in his Speech/Cognition.


Occupational Therapy once a week. This is typically puzzles...Mr. Potato Head...and other fine motor enhancers. We've also introduced a weighted vest and some light brushing to help on those SUPER active days. Trevor is evaluated at 9-10 months fine motor skills.


Physical Therapy once a week. It totally tickled my funny bone. A set of professional eyes watched this video from the other day...and sent me an email telling me not to panic...but recommending I consider having a PT eval for Trevy. I laughed SO hard! I have a weird sense of humor. Trevy does indeed receive PT. And we've even been to a see a Dr. Ortho. But he recommended (a barbaric torture device) night leg braces . I want to take a picture to give some umph factor. But frankly...I'm tired. And you're all creative imaginative people. Anyway...our PT comes to our place once a week and works with Trevor for an hour in a variety of ways. Walking up & down the stairs. Rolling on a big ball. Tummy time. We're focusing a lot of energy on building his core strength. Which is tied to fine motor development. Which is connected to speech. I've learned that each element is intricately connected. Other than his core & right sided weakness Trevor's gross motor skills rock. For being a seizure boy n' all.



We also have a weekly gym class. It's basically free play time. With lots of neat-o equipment that someone else gets to store for our playing pleasure!



All of the above are compliments of our local Early Intervention.


Trevy's To Do List...


Dr. Neuro (Dr. Rockstar agrees) has recommended weaning Banzel. We saw zero improvement in seizures or cognition. If anything...both got worse. Topomax (now the generic Topiramate) has been a much better ride. Trevor seems to be handling it well. And at our last increase...my heart fell for it. The "honeymoon hope". The morning after our last up Trevy had a cluster first thing in the morning. As usual. But then went the WHOLE day long without another cluster! Until right before bed. Two mild clusters. Which gave me sweet dreams. Until the next morning. When the honeymoon had obviously ended abruptly. And we're back to gobs of seizures again. Like I said...short honeymoons suck!


Anyway...We'll keep the Top and add Depakote. If any readers have experience...please share in the comments section! I'm lazy...and would rather learn from you than hunt it all down on my own!


We still do not have a date to see Dr. Rockstar...with whom we are exploring the option of surgical intervention. He will be out of the country teaching future Dr. Rockstars for the next week. Plus he's been busy! Another part of the delay is that he has to review all of Trevy's information prior to scheduling a date...to make sure we don't need any additional testing. He has received everything with the exception of one EEG cd.



And that's a wrap.




September 2008
Trevy is 17 months old


After 8 months seizure free our worst nightmare became reality. A VEEG confirmed what our hearts already knew...Trevor had a relapse of Infantile Spasms.

Of course we are devastated. But devastated is not the same as hopeless! We continue to hope that Trevor will overcome his IS. And we continue to pray for acceptance no matter what the ending outcome may be.

His first injection of the 2nd round of ACTH was September 11th, 2008. He will be on a high dose course. 75 units daily for two weeks. 75 units 3x the 3rd week. 75 units 2x the 4th week. 75 units once the 5th week.

We will also be using Zonegran as a *safety* drug this time. He will remain on Zonegran for the foreseeable future.

We are crossing our fingers that the 3T MRI scheduled for September 24th will provide some elusive answers about Trevor's underlying cause of IS.

this video clip was taken at home. Trevor's spasms were so mild that almost everyone who viewed it thought it might be nothing. But my heart wouldn't agree. So I speak with authority on this...if your heart is tearing you up...trust it. Pray that it's nothing. But trust it!

August 2008
Trevor is 16 months old

Seizures - We completed a BEAM Study in Boston...and it provided us with some interesting (and scary) data. I have brought up Trevor's lack of reception/expression with any doctor...therapist...anybody...who would listen. The response is always the same...he's SO young. He's a boy. Give it time. Which is fine...except something deep inside of me wouldn't let it die. And after we received the results from the BEAM...it became very clear that my mommy-instinct was spot on. There is a significant disruption in the way Trevy's little brain receives speech vs. sound. We also learned that the pattern of his abnormal brain activity is indicative of a syndrome called LKS. It is excessively rare...and the information out there is so little...that I'm not really sure what to think. As as I said...it's indicative...he has not been given the diagnosis.
Dr. Boston (or 2nd Opinion...I haven't nailed down a nick yet) strongly feels that Trevor will need his left temporal lobe removed sometime within the next two years. He also believes Trevor is having drop seizures. He witnessed Trevor's right leg give out (this happens all the time) while we were in his office...and after reading the EEG report told me he has no doubt it was seizure related. Dr. Neuro (our regular neurologist) is not quite so convinced on either account...brain surgery or seizures. She feels that Trevor's speech will shift to his right...undamaged...hemisphere. We've agreed to give it six months...and if Trev doesn't make significant forward movement in speech...we'll revisit the idea of surgery. And she ordered a 3 day EEG to see if we can determine with clarity whether the Trevy tumbles are actually seizures. We're still waiting on the results from that weekend (of hell :o).


Development - Trevor has made so many forward strides that sometimes I want to pinch myself. Although...because he is such a fighter it's made it more difficult to acquire services from EI. But after the BEAM Study...I was able to convince everyone that he would benefit from more therapies. And so now he is receiving Occupational Therapy twice a month...Speech Therapy twice a month...Physical Therapy once a month...and Music/Gym Class weekly. And I can truly say...since we've bumped up the intervention we have seen some forward progress! Maybe it's in my head? But there has been improvement...without a doubt! And it is such a joy watching him succeed!


Mommy - Dealing with all the drama of IS is heavy enough...but for us it literally changed our entire life plan. We were thigh deep in luggage when Trevor's spasms began. We were planning to return to our non-profit career in Tanzania, Africa. Of course...the reality of what we were dealing with sank in quickly. And so much life has happened since those beginning months. We have decided to stay here in Rhode Island. My family is here...and the support they offer is invaluable. So my husband put out resumes (it took 40 or so to get a call-back...ack!) and found a job here. We're in the process of looking to buy our first home. And re-adjusting to life here in the States. Nothing has worked out the way we'd planned. But I can say...heart-felt-ly...that I have peace with where we're at. Don't get me wrong...sometimes the sadness of knowing that Trevor has A LOT to overcome yet...is staggering. But right now we're okay. And the more time that passes...the easier it gets to take life in the *right nows*.

March 2008

Trevy is 11 months

Seizures - Trevor remains SF since his 4th injection of ACTH. His EEG still shows abnormal activity throughout his left hemisphere. We go to Boston for BEAM testing (BEAM is a super EEG) which will hopefully provide us with some answers or at least offer us a path towards finding what is causing Trevor's spasms/abnormal brain waves.


Development - Trevor continues to amaze us daily! But we are concerned about his speech...he doesn't say much. There are signs that he is understanding simple words such as "kiss" "ball" "doggie"...which is good news! His fine & gross motor skills seem behind a bit...but he is coming along. We're hoping that EI will begin some physical therapy to help on that end. Trevor turns ONE on April 3rd!



Mommy - I feel like I'm coming out of the fog that surrounded me when Trev was first diagnosed. I think that numbness of the first few months is a normal coping mechanism...much like the BabyBlues or PPD. Trevor's dx is much bigger than anything I ever thought I could handle. I won't lie...there are dark days when I wish I could just fall asleep and never wake up. When I feel like the sadness is going to swallow me whole. But the support of my faith, husband, family & friends continues to keep me going. And my love for Trevor has suprized even me. I've always heard that there is nothing stronger than a mother's love...I'm beginning to believe it!

Okay...so for most kids this wouldn't really be that big of a deal. But for you, Trev, it's HUGE. MONDO - even. See...right about the time your spasms started you began to reject ALL foods other than formula. Oatmeal - lip lock, baby! Sweet potatoes - no way! Bananas - not a chance! Looking back now (insert hindsight's 20/20) I know it was the beginning of your regression - at the time I thought it was just you being picky. Since your spasms have gone into remission we've watched & cheered as you continue to make forward progress.

Like eating a WHOLE jar of apples & oatmeal!

Ready

Seeeeeeeeeet....

Gooooooooooooooooo!

other skills my little man has regained or developed since seizure remission

smiling & laughing

sitting up w/o support

crawling

standing & cruising a bit

banging toys

holding toys in each hand

picking up cheerios or puffs & successfully getting them into his mouth

babbling again

maintaining eye contact

throw & chase a ball

complain :O)

and of course...

eating "real" food!