The Vagus Nerve Stimulator, our Projected Seizure Terminator

This week we visited Duke Children's Hospital as a family. Yes, as a family, our four year old daughter got out of school and joined us all dressed up as Wonder Woman, "I want to be strong for Ezra daddy!" I swear some days this girl has more courage than her parents when dealing with the unknown of Ezra’s future. I love how she treats what seems to be constant visits to hospitals and clinics for Ezra as a normal family outing. Moreover, she does it with super hero fashion and a smile for days. I guess in her own right she is a super hero.  What other four year of kid sees her brother go through multiple seizures, trips in ambulances, and asks mom and dad what she can do to help.  Zara had no idea why we were at Duke Children's Hospital, she just knew she had to be a supportive big sister. However, our visit was for a specific reason.

Ezra's visit was for a surgical consultation on the Vagus Nerve Stimulator or VNS (Source 1). The VNS is a treatment for seizures that are difficult to control with current drug prescriptions (Source 2). While surgery is always a parent's worry, Ezra's current medications have not helped to decrease his seizures. In fact, Ezra has had more seizures lately then in the past. While Naz and I both understand that a VNS may not fully eliminate Ezra's seizures, the current results on other patients shows great progress. So the way I see it, if another means of seizure control shows potential we must look further into the procedure of VNS.  While we approached Duke with a realistic mindset, a parent can’t help but hope and pray that this visit will be the “fix” for our son.  The drive back from most of Ezra’s medical appointments are very somber.  Naz and I act like all is well while riding with our daughter back home. Tears are quickly wiped away, emotional conversations are cut short with Paw Patrol and Disney discussions become the topic of conversation for our daughter. Maybe this is why I often laugh inside when others tell Naz and I to make sure we take the time to “deal” with all that is going on with Ezra.  What parent ever has devoted time for meditation and self-realization when helping a handicapped child with special needs while trying to present a sense of normalcy in the home for our daughter?  

Day in and day out, I can't help but watch my son and think that all his seizure medications have him in a constant haze or an unaware state of mind. The VNS appealed to me not only because of the results, but also because it’s a drug free option. Now I'm the last guy to be promoting a holistic organic lifestyle, but what I do know is that my son is on some serious meds at two years of age. I also know that no drug has rendered my son seizure free. Whatever the procedure, whatever the means, I simply want my son to progress. I pray my boy can one day be a fully functioning teenager.  In fact, I hope there comes a day he thinks he is the Alpha of my house and challenges me on the rules I set forth.  I gladly welcome and seek this “first world” problem set.  Additionally, seizures are the least of my worries when it comes to all of Ezra’s disorders. 

I worry about my son’s developmental delays both physical and mental. Are the drugs denying my son a chance to mentally and physically grow? Will my son ever talk, walk, or be able to play with my daughter? Nonetheless, one hurdle, one obstacle, one possible solution at a time. If little to no drugs means my son can make mental and physical progress then bring it on. 

My job as the “Fighter’s Father” is to do just that, fight for my son.  I’m a simple man, the way I view this fight is no different than how I viewed every opponent when I used to compete in Golden Gloves boxing.  Ezra’s disorders are my opponent and until I end up in a grave I will do everything in my power to fight for my son. Being hopeful or trusting in God does not ever translate into not fighting or being complacent in your given environment.  My son fights every day trying to talk, trying to remain in a sitting position, and rolling around in order to move.  Why should I be any different?  I will always fight for Ezra!  

"If you can't fly then run, If you can't run then walk, If you can't walk then crawl, but whatever you do you have to keep moving forward."  - Martin Luther King jr. 

-Vagus Nerve Source 1: Caution-https://youtu.be/gp67EQhNfj8

-VNS Treatment Source 2: Caution-https://youtu.be/w949abtcxxI