Calahan and Tyler are beautiful, six year old twin boys who have overcome many obstacles in their short lives. Born prematurely at 23 weeks, Calahan weighed just 1 lb. 1oz and Tyler holds the record for the smallest baby boy to survive, weighing at birth just a mere 11 ounces. I would like to share some of our journey with you.
After birth, there were many concerns for the boy’s health ranging from their capacity to breath own their own, damage to their eye sight from long term oxygen usage, to the fear of infections. After several tumultuous months, we were excited as Calahan was making progress, gaining weight, and learning to breathe without a ventilator. This joy soon turned to great sorrow when he contracted spinal meningitis from a serious infection.
The future for Calahan was now unknown. It was heart wrenching to think of what his life would be like with a neurological impairment. As we got through the shock of Calahan’s diagnosis, we were dealing with a day to day battle for Tyler’s health. His lungs were so tiny and undeveloped at birth, it was a race against the clock to keep him well enough to grow and survive.
After 7 months at St. Barnabas Hospital, the doctors felt the best place for Tyler to grow and thrive would be Children’s Hospital of Philadelphia. He was transferred to CHOP where we made our home for the next 9 months. Tyler had a trach and feeding tube put in to help him grow as fast as possible. He would visit 3 more hospitals in the Northern New Jersey region before finally making his way home at the age of 2. Although he came home on a ventilator with his trach and g-tube, we were ecstatic just to finally have him home.
Calahan and Tyler have made tremendous progress over the years. Calahan attends a wonderful school where we are working on his independence with the hopes of him walking someday with a walker. He loves to go to hippo-therapy, swimming and spend as much time outside as possible. Tyler, through the help of a feeding clinic, was able to have his g-tube removed and the doctors closed his trach site at 3 years old. Both boys are non-verbal, but the joy and smiles you see on their faces each and every day make communicating with words unnecessary.
We are so grateful to the Shannon Daley Fund for becoming a part of our lives. Calahan is in desperate need of a feeding chair as well as a stander and bathing system for home. Tyler will benefit greatly by attending another intensive feeding session to keep up his progress with eating. Both boys have many therapies they attend to, which allow them to keep progressing and we are thankful the Shannon Daley Fund will allow us to continue with these therapies. Although we face challenges, the wonderful people that have come into our lives has humbled us and made us truly grateful.