The Journey of Super Grover T

My son, Grover Thomas Hood, is 3 years old. Grover has yet to eat an entire meal without the aid of his G-Tube. Truthfully, starting with this part of the story is likely not the best first step, but it does sum up the entirety of our journey - and is the catalyst for our newfound determination to uncover answers that have been unidentifiable to date.

Let's take a step back - and I will give you the nickel tour of Grover T's eventful life up to this point. Keep in mind, this is the nickel tour. As we get to know one another, I will share detailed stories from our many adventures. But for now, let's start simple. As many a famous author has noted, it's not the end of the story that keeps you reading, it's getting there that is half the fun. Or maybe it was Clark Griswold, but I digress.

Grover T was diagnosed with Trisomy 21 while my sainted wife (more on her later - see above) was still pregnant. I am sure that with a bit of research I could pinpoint the exact date of diagnosis, but it is irrelevant, and the ensuing months leading to his birth are but a blur to me now. We confirmed his diagnosis based on a Level 2 sonogram which showed a potential (and subsequently verified) congenital heart defect, as well as something called an ventricular megaly. The secondary diagnosis proved to be a non-factor, but the heart defect...well that's another story.

Grover was born at full term via C-Section. Aside from being born with Down Syndrome, he was also given the aforementioned heart condition, adorably referred to as an AV Septal Canal Defect. My free crash course in medical training explains this as 2 holes in between both ventricles and chambers which cause the heart to work harder than normal to move blood through the body. Other benefits to having this condition include leakage to the lungs and the possibility of going in to heart failure at any time. Luckily and despite it all, Grover seemed and was as healthy as could be when we brought him home.

We knew that surgery would be unavoidable from the get-go, but the timeframe was loosely defined as somewhere between 4-6 months after birth, depending on how he progressed. After his first heart surgery, we were under the impression that life would return to normal upon discharge. This is where a common theme will begin coming in to play - Normal does not exist here.

Our surgeon informed us the night before our planned discharge that one of Grover's stitches had come loose, and the best recommendation would be to immediately correct the issue, or more succinctly, go back in and perform the same surgery again. Oddly, Grover had begun to resist feeding and his overall mood was slowly deteriorating. Nothing like a little open heart surgery to get you back in good spirits, right?

The second surgery came and went with no real events - aside from the whole surgery, chest tube, tree of life, Dacron patch, anesthesia, trache tube and canula thing. 7 days later, we were home. Then it started to get scary.

Grover absolutely refused to eat. When he would take his bottle, he would thrash, moan, and eventually gag himself in to a fit of discomfort. This occurred for a couple of weeks, and we forced the hospital to admit us. Thus began 17 days of ICU vacation - during which time we were encouraged to have a Nissen procedure performed and to have a GI tube inserted so that we could feed our son.

He has not eaten a full meal by mouth ever since. This was almost 3 years ago. Over the next few weeks, I am going to share as much information as I can in order to draw interest to our son's journey. He is a wonderful kid, full of joy, and he is MY hero. He deserves help, he deserves someone with the talent and intelligence to get to know his story, and help him discover what event or physical obstacle is preventing him from eating, growing and thriving like his friends.

Thanks for reading - I hope Grover's story will inspire you, make you realize how incredible life is, and provide you with the same hope I am looking for. You might also laugh or cry a few times along the way, and not always at the most appropriate times.