First Visit?

Below is a video I put together for a psychology class. I share our story from diagnosis through six years old. Please be aware that some of the pictures are medically graphic. 







Whatever you do...do not go home and google this!




Those were the pediatrician's words after watching this video clip...










I'd taken the clip with advice from my hubby.  The kids and I were in RI with my parents.  He was in DE loading a container.  A container that was going to be shipped back to Africa.  Because that's where we were going.  Where we were supposed to be.  The idea was for him to load it up, come back to RI and then load our little family of five up on a plane back to Tanzania.  See, once upon a time we were missionaries.  But then Trevor started doing this weird arm thing.  It never crossed my mind that it could be a seizure.  Of course, now I can't watch that clip without crying and feeling the urge to vomit.  But at the time, I was so very innocent to all things catastrophic epilepsy.  The first time Jonathan and I saw a cluster together, we thought it was cute.  Because everything babies do is adorable.  The second day, my stomach dropped.  By the third day I began frantically calling the pedi until he agreed to see me.  I distinctly remember leaving THREE messages the same day.  By my 5pm message I was a basket case and told him I was not a rookie mom, I was a mom of THREE children and something was VERY wrong.  If he didn't see me ASAP I was taking Trevor to the ER.





He called us in right away.
 




   I remember intently watching him as he watched the screen on my little digital camera.  I was trying to read him.  Turns out he had a great poker face because I had no idea just how deep his stomach had dropped After watching the clip a couple times he asked if he could show it to a colleague.  He had an idea of what was happening but hadn't seen this since his med school days.  Over 20 years ago.  I gave him the go ahead and snuggled Trevy close to fill the emptiness of the room.  And to calm my heart.  Pretend everything was okay.  It was reflux.  It was nothing.




It's hard to recall my exact emotions in those moments.  Crisis has a way of making memories fuzzy around the edges.  I remember wishing like crazy Jonathan was with me.  I remember telling myself I was overreacting.  To chill out already.  I must have thought it could be serious enough to radically alter our lives because when he walked back in the room I teased...





It's the law.  You have to promise me I can go back to Africa.  My bags are packed and we're all immunized.  Even Trevor has a passport! 

   



I'm sure his smile was tight but I don't remember for sure.  I think we're dealing with Infantile Spasms, he said.  Which sounds so innocent.  Such a paradox.  He urged me not to google the term.  And asked me to go home and email him the video file immediately.  He was going to email it to a pediatric neuro that night.  He even called me around 10pm because he hadn't received the clip yet.  We were having formatting issues. Finally got it sent off and the doctor called an hour or so later to tell me to take Trevor to the local Children's Hospital for an EEG in the morning.





My heart was in knots.  The kind that make you queasy.  That make you want to curl up in a ball and sleep until the nightmare is over.  Being ever the rebel I had done exactly what the good doctor had warned against.  I'd googled Infantile Spasms.  I've never been one for surprises and I needed to know what we were up against.  I don't regret researching it.  I think any parent who hears those two words should.  Of course, there is a lot more information out there now.  More hopeful real life stories of families shared alongside the stark med-speak.





When I called Jonathan I was a sobbing mess.  I like to imagine myself standing tall and strong.  Braced for the storm.   Looking out a window.  Tears streaming down my cheeks with my heart full of faith.  Reality was probably closer to me gnashing my teeth in hysterics on the floor.  I begged him to come home.  I had never done that before and haven't since.  But that night I needed my husband with me.  It was a logistical nightmare for him to leave in the middle of loading the container but somehow he managed to figure it out.  I will always be grateful for those who picked up the slack and so that he could come to us.  He drove six hours through the pouring rain (how cliche, right?) so he could hold me.  So he could be there for the appointment at the hospital the next day.




Trevor's first EEG would confirm the doctor's fear.  He had Infantile Spasms.  Infantile Spasms is an extremely rare, malignant form of epilepsy.




And our life went from normal to not in a matter of 5 days.  



(he got his nick name Heavy Trevy 1/2 through our first round of ACTH)






It feels like that happened a million years ago. So much has happened over the course of Trevy's life since then. We've had a season of seizure freedom.  Followed by the heart crushing of relapse.  Spent months on the med-merry-go-round.  Trialing this.  Cocktailing that.  Watched our son make gains even in the midst of intense struggle.  For the better part of two years Trevy had more than 200 visible seizures daily.  We mourned as the Seizure Monster stole developmental ground from him.  We explored surgical intervention.  First locally. In Boston.  Medical Mecca.  Where we were told that our son had LGS, for which there is no cure, would have hundreds of seizures daily for the rest of his life and would never be a surgical candidate.  We were emotionally raw and shattered.   After spending a handful of months nothing more than a puddle on the floor I finally found pieces of courage and strength from somewhere.  And with shattered dreams and a broken heart began the desperate mission to rescue my son. Or come as close as humanly possible.  




(Trevy the day we took the call from Dr. Rockstar and learned he was a surgical candidate)




Which is how we found ourselves there.  In the brightly lit surgical wing.  Trevy on a gurney looking two year old adorable in hospital issued jammies.  All beautiful soul and trust shining from his sweet, sweet eyes as we kissed him good bye.  Tears streaming.  And handed him over to the skilled hands of the Neurological Team of Detroit Medical Center.






 (between surgeries with the GRIDS in place)


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.  If you're morbidly curious you can click here to see graphic pictures of Trevy's removed brain tissue.  It is the most radical brain surgery in neurology today.  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 hopefully control the potential future seizures. 


 (taken literally seconds after seeing him for the 1st time post hemi surgery)
 



I told you.  So very much has happened since that night in the pediatrician's office.




Today Trevy is a happy boy.  Yes, he has intensive special needs.  He is cognitively delayed.  The right side of his body rebels against him.  Trevor is not seizure free and you probably would struggle to understand him if you had the joy of chatting.   Trevy loves his family and Thomas the Train toys.  He can almost spell his name and has a vocabulary larger than Science can explain.  He throws tantrums like a regular child when he doesn't get his way.  His favorite is snuggling with the iPad when he's tired.  He's working on potty skills and loves to name what shape his poo is when he makes it to the toilet.  He is beautiful, sweet, the funniest little boy I know and amazing!  I share our journey here when I have the time and energy...





I can't promise you that every post is filled with joy. And acceptance. And laughter. And peace.




The fact is. Some days I rage. And sob. And fight.  And complain.




Because I'm just a mom




Even though it's not always pretty, I do strive to share our journey with honesty. And grace. And humor. And prayer...that at least traces of Hope can be felt.   Because in spite of all the guts of life with catastrophic epilepsy...there is joy too.  And hope.  SO much hope.  And through it all my little munchkin has smiled and danced and booty shaked along.  Just happy being Trevy.






(Trevy 3 years, first day of school five months post op)





 (Trevy 3 1/2 years, Make A Wish trip to celebrate his 1 year hemi anniversary)




 (Trevy 4 1/2 years with his two favorite people in the world, 2 years post op)



(Trevy 5 years with Toby & Bristel at his favorite place on earth!)












Curious about how Trevy is doing today? Click here.  Interested in learning more about Infantile Spasms?  Click here.  Considering brain surgery as a rescue measure for your little hero?  Scroll through these posts.  Looking for at home therapy ideas?  I like to share mine here.  Would you like to know more about Trevy's mommy?  Click here.  Need to talk to me?  I'm here.  Are you a grandparent, friend or relative of the family living with IS desperate to offer comfort?  Click here.