Whatever you do...do not go home and google this!
Was my pediatrician's admonition. After watching this video clip
that I'd taken on my digital camera. Putting a name to the jerky movements. That I did not think were seizures. Of course when I watch that video now...my stomach churns with all the emotions blended in knowledge.
that I'd taken on my digital camera. Putting a name to the jerky movements. That I did not think were seizures. Of course when I watch that video now...my stomach churns with all the emotions blended in knowledge.
Infantile Spasms he said. Such simple words. Innocent sounding words. Words that should not be googled according to furrowed browed doctors. Words that would...in the unexpected blink of an eye...completely redirect and radically change the course of our lives. Forever.
Infantile Spasms is an extremely rare, malignant form of epilepsy.
Our world was rocked to the core the day (November 16, 2007) that our 7 month old baby boy was was given a diagnosis. And of course I didn't listen to Dr. Pedi's white coated advice. I turned to the internet. And yes, much of the information is starkly sad. But I also found stories of hope. And faith. And healing. And gut honesty. And so it was that shortly into this crazy journey...I committed to do the same.
(he got his nick name Heavy Trevy 1/2 through our first round of ACTH)
That was a little over two years ago. So much has happened over the course of these two years. 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 gobs of seizures daily for the rest of his life and would never be a surgical candidate. It's hard to breath in those emotional sucker punch moments. After spending a handful of months nothing more than a puddle on the floor I finally gathered the shattered pieces of courage and strength I could find. With the love and support of my family...and friends...pulled myself off the floor. 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)
(taken literally seconds after seeing him for the 1st time post hemi surgery)
I told you. So very much has happened these past two years.
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.
I am...after all...just a mommy. Madly in love with a hero. Disguised in a little boy's body.
What I can promise you...is that I always strive to share our journey with honesty. And grace. And...I've been told...humor. And prayer...that at least traces of Hope can be felt.
(5 months post hemi on Trevy's 1st day of school)
And so I invite you to come. Explore the links. Sift through old posts. Fall in love with Trevy. With our family. It is my heart's deep desire that as you walk alongside us you will find hope...comfort...and heart connect...
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.
