Thursday, April 4, 2013

Rhett's Journey

For the new RWB & Me readers, you may not know Rhett's story. His journey with Epilepsy. 
So here is the "Reader's Digest" version, if you will.

Rhett began life at 8lbs 13oz. My tiny baby. I was shocked at how little he was. Seriously.
He was healthy, other than a few small glitches, such as being tongue-tied, a weird heart beat, and a couple other "manly" issues. Adorable, squishy faced sweetness.
Rhett's first snuggle with Mommy.

Brand new Rhett & Daddy.

Our littlest one, grew and grew and charmed us with his quiet, loveable nature. Rhett met developmental milestones by the text book, other than his growth, which took off in true Gertsma style. When the seizures began at 8 months old, we were completely shocked and unprepared as it seemed so out of the ordinary and unbelievable, that this perfect baby boy could be having seizures. 

Rhett 8 months old.

After the unthinkable began, those Seizure Monsters reared their ugly heads, our new normal of hospital stays, tests, EEG's, MRI's, meds, explanations, searching for answers and a lot of fear, tears, and praying began.

Rhett's first ambulatory EEG.
At 15 months, an additional diagnosis to Epilepsy was given. Rhett has TSC. Tuberous Sclerosis. And so another journey begins. Education ourselves and everyone on our path, about TSC. Genetic testing for our immediate family, more tests for Rhett and more results. 

Rhett has all the major markers for TSC. Tubers (benign tumors) in his brain, right eye, heart, right kidney, facial angiofibromas (skin tumors on his face), those little fall down ears indicate kidney problems, the white ash marks all over his body, the serious, not super smiley nature of TS babes, and on and on and on. More of the unthinkable. More fears, tears, and learning.

Rhett 15 months.

The Seizure Journey continues as meds are tweaked and tried. Those pesky seizures keep rearing their ugly faces. Knocking our Bup down. Still coming. Trileptal & Keppra are a part of Rhett's daily routine. But the seizures keep coming and the Keppra adds sadness and unconsolable tantrums, sadness really. so eventually Keppra is switched out and Topamax is added, much to our concerns. There's a reason it's called "Dope-a-max", it sedates, it heats up and it can affect vision. Thankfully it is a small doseage and so far no side effects. Each increase in Trileptal always brought side effects for a few days....clumsiness mainly...and then it would go away. We have been very lucky. 

Eventually, a new seizure shows and although to the unknowing it seems minor as this new temporal seizure would just put Rhett on "pause" shall we say, it is wicked and left unchecked will cause more developmental delays, eventually effecting memory and development. 

Meds are not working to stop this quiet monster. Not well enough anyhow. And so during one LVEEG (long stay video EEG), our sweet Doc Neuro explains that Neuro-surgery is the best option. I will always remember that day. That hospital stay with our adorable, three year old. How does a parent absorb this? Let alone a three year old. So now we prepare for another chapter in this Epilepsy Journey, wrought with fear, facing the most difficult decision of our little boy's life.

Bup in ICU.

Rhett had his right Temporal Lobe and Hypocampus removed. He came through surgery and recovery beautifully. 

We have never shed so many tears of fear and gratitude. Never has Rhett reaching for me meant so much as it did that day in ICU. 

Rhett recovering.

Rhett's sweet preschool teachers sent him a balloon bouquet and a group of lovely ladies in a near by city gifted Rhett with a handmade quilt. These small gestures showed us love and hearts that brought tears and smiles to Rhett, Brad and I. 

Taken 6 weeks after surgery.

And now here we are almost two years post surgery, with new growth and development, meds still holding those seizure monsters at bay, barely at times, but still at bay. Yes the surgery was successful. Rhett is a different little guy since surgery. He's happier, More outgoing. Friendly. And was NONE of that prior to. But since Rhett's brain is riddled with tumors, seizures will always be a part of his life as will meds, tests, dealing with fine motor, gross motor, speech and other delays.etc, 

As difficult as this Seizure Journey has been, I know we are blessed. We are blessed that Rhett is doing as well as he is. We are blessed to have the Neuro team we have. We are blessed to have others in our journey that care for us, lift us up and make us laugh. But most of all, we are blessed to have Rhett. 

Rhett Kindergarten 


  1. And we are blessed to have this wonderful loving little guy as our grandson! gramOdoe

    1. Thanks Gram!
      PS: Its so good to see your comments again!