All photography provided by Shelby Starks, Kristen Wampler, and Annie Syer
Father's Day June 2013 Brody was "head butting" me while I was burping him. Michael said "that's not right". I said "no, he's 5.5 months old, he's just gaining neck control". He was right. It quickly got worse and we knew something was wrong when the motions (which looked simply like the startle reflex) were involuntary, and coming in clusters. We sent a video into our pediatrician's office, who told us to come in right away. We ended up at the local Children's Hospital, and after sitting in the ED for HOURS watching our son have these horrible seizures (what we would later find out are Infantile Spasms), we finally got up to the neurology floor and he had his EEG. They then whisked him off for an MRI, which lead us to our diagnosis of Tuberous Sclerosis. I remember feeling like I was in a nightmare. That then they had to check all of his possibly affected organs- his kidneys, eyes, heart. One by one they took our sweet little 5.5 month old off for these tests. When the hospitalist came back to give us the results of the kidney ultrasound, she actually had tears in her eyes. She said I am so sorry. He doesn't have an AML (tumor associated with TSC) he has Polycycstic Kidney Disease. So, eventually his kidneys will fail and he will need a transplant. There is no cure for that, either. That night I was so emotionally drained, I crashed. I remember waking up and just thinking, it's not true- this isn't happening. But it was.
Our Brody has so many cards stacked against him, he has been through more pricks, prods, and anesthesia then probably most people in a family combined. I believe he has been under anesthesia 11 times already, and he is not even 3 until January. He has tried 8 seizure meds, he currently takes 3. He takes medicine for his high blood pressure as it relates to his kidney disease. And yet, a stranger would never know he is sick. Yes, he runs a little funny. But, he RUNS!!!!! We are so blessed that Brody's Infantile Spasms(those first damaging seizures) were controlled after the first dose of Sabril! There could have been so much more damage done had they not been. He goes to Hippotherapy and has a favorite horse there, Daisy. She's deaf. So, she's special, too. His team of Doctors, Nurse Practioners, Nurses, Therapists, and office staff are all so awesome! He walks in the offices and greets them with his big smile and hello as if to say "I've arrived". He can light up a room!!!
Unfortunately, despite Brody doing SO AMAZING, he is having 1-2 subclinical seizures per hour. This means for the past year, he has been having seizures that only the EEG machine can see. So, we need to take him to get this surgery so that his brain does not learn that this is normal. We need for it to re-route itself and learn that no seizures are normal. This is a very extensive procedure that will happen over 3 weeks. It will be done by Dr Howard Weiner the neurosurgeon, and Dr Orrin Devinsky, the neurologist. They have been perfecting this procedure for almost 10 years.