Dylan is a 2 1/2-year-old curious, silly, and loving boy. He loves the outdoors, cars, superheroes and keeping up with his big brother Liam. Dylan aka Tito was born in Long Island, New York August of 2019. In New York State they do infant blood screening at the hospitals. In the hospital we noticed Dylan had a puppy bark, bent little ears and he had reflux almost instantly. Ultrasounds and scans had only shown his kidneys would need to be checked upon arrival but no other complications. We left the hospital with a slew of doctors’ appointments, and we brought Dylan home.
In the middle of our newborn photo shoot, we had gotten the call from New York State that Dylan’s screening showed he had no T-cell production and needed to contact immunology for further blood work and testing. From there Dylan had genetic testing and then visited the head doctor of almost every medical department within days, and had several tests performed at Cohens Children’s Hospital. Genetic testing along with a vascular ring diagnosis labeled him as having 22q11.2 deletion syndrome.
Right before Christmas he had a hernia surgery and testing for laryngomalacia which is done by a throat scope and had an auditory brainstem response (ABR) hearing test. After Christmas he had a vascular ring procedure. Additionally in the next two years had two sets of ear tubes, additional hearing tests, and a mild tongue and lip tie correction. Dylan was prescribed thickened feeds as a baby but now eats everything under the sun. He does have a milk allergy. As he continues to grow it is at a very slow pace, but he’s finally made it on the official scales. He is only 25 lbs and 2ft 9in at 2 ½ years old.
Dylan reached many of his milestones right around the time he was supposed to. He does receive speech and Special Instruction to assist with speech. Life with Dylan during the pandemic’s height, heightened our concern for his exposure to people and places. As a family we were in fully protective mode, but despite our best efforts we all ended up with it and believe it or not Dylan did the best with it, all the while cutting four teeth.
Dylan amazes us every day. Anyone who meets him, instantly falls in love with his big smiles and infectious laugh. It has been and will continue to be a long winding road, and fast paced learning curve. We are extremely lucky to have a super loving and supportive family. This little guy is small but mighty, He can Hulk Smash like no other, and run as fast as the Flash, but he is a smarty pants who gives the best and biggest bear hugs. He puts a smile on our faces every day and we love him more than words could ever express!
