At just 3 years old, Dylan received a diagnosis that would change his life. With a dedicated family who refused to settle when it came to their son’s care, they were led to Nemours Children’s Hospital, Delaware where they finally found the answers and understanding they needed.
From the time he was just 6 months old, Dylan had been receiving physical and occupational therapy through early intervention services with a local care team. However, as Dylan approached his third birthday, a significant hurdle loomed on the horizon. Without a formal diagnosis, he was at risk of losing these vital services.
Brandi, Dylan’s mom, recalls the frustration and anxiety of those early years. “We weren’t having any luck with our original care team to get a diagnosis. Our PT recommended Nemours Children’s, she had other parents that had gone there and were very happy.”
The family decided to take the therapist’s advice and scheduled an appointment at Nemours. “We eventually ended up receiving a cerebral palsy diagnosis from his previous provider when Dylan was just under 3 years old,” Brandi explains. “But it was the appointment at Nemours that set us on the right path, and we’ve stuck with them ever since.” The comprehensive and compassionate approach at Nemours provided the family with the clarity and resources they needed to navigate Dylan’s diagnosis effectively.
Finding Answers
“At Nemours, we finally got answers, and doctors who weren’t afraid to label his cerebral palsy and discuss all aspects of it,” Brandi recalls. “We finally felt heard.” The journey to this point had been long, but the compassion provided by the Nemours team was a crucial turning point. It wasn’t just about putting a name to Dylan’s condition; it was about finding a team of professionals who understood the complexities of his needs and were committed to addressing them comprehensively.
The diagnosis also meant significant changes in their daily routine. Dylan’s care now included weekly physical therapy appointments. These sessions were essential for improving his mobility and addressing the unique challenges he faced. Unlike his two older brothers, who had developed motor skills more conventionally, Dylan’s journey was different from the start. The family had to adapt to a new normal, one that involved regular visits to the hospital, exercises at home, and a deep understanding of the nuances of cerebral palsy.
Experts that Understand
For Dylan and his family, Nemours Children’s is more than just a place of treatment. “First impressions are big, and when you have an appointment time and the appointment actually starts within 5 minutes of said time, that was a great start,” Brandi recalls. This punctuality was a refreshing change that immediately put the family at ease. The smooth and timely process was just the beginning of a journey that would prove to be both comprehensive and deeply personal.
Dr. Wade Shrader, Cerebral Palsy Division Chief, has been a pivotal figure in this journey. “Dr. Shrader has been great from the get-go,” Brandi shares. “He is wonderful with kids, very personable, and doesn’t mind tons of questions.” This approachability and openness helped the family feel supported and informed every step of the way. What sets Dr. Shrader apart, however, is his personal connection to cerebral palsy. “The fact that he has experience within his own family with cerebral palsy kind of put our minds at ease that the things he recommends aren’t just from a doctor’s point of view,” Brandi explains. “He has had to make hard decisions for his own family, so he knows what it’s like to be on the patient end of things.” This unique perspective has been invaluable, offering both medical expertise and empathetic understanding.
Since beginning treatment at Nemours, Dylan has undergone several significant surgeries, each aimed at improving his mobility and quality of life. These procedures included tendon lengthenings at multiple places along his legs. The surgeries were complex, but the care and precision of the medical team ensured that Dylan was in the best hands possible.
In addition to these surgical interventions, Dylan also regularly sees Dr. Maura McManus for Physical Medicine and Rehabilitation sessions. “I know that the Rehab Team will push Dylan to make sure he’s doing the work he needs to, to get the most out of his surgery,” Brandi says. “Yet they also accept when he’s having a bad day, or needs a change, and pivot to make things work for him as well as be effective.” This balanced approach, combining rigorous therapy with a compassionate understanding of Dylan’s needs, has been a key factor in his ongoing recovery and development.
“We look forward to continuing Dylan’s care at Nemours,” Brandi shares. “He looks forward to coming in for appointments to see everyone. The child-life team has had a huge impact on him as well; they’re so uplifting and encouraging, they make him feel like one of the team.”
Next Steps and Advice
Dylan’s weekly routine is filled with activities that not only support his physical health but also boost his spirits. He looks forward to multiple days of physical therapy each week, where he works on strengthening his muscles and improving his coordination. Horseback riding and swim therapy are also integral parts of his regimen. “We want to continue encouraging Dylan to be independent and pushing him enough to get out of his comfort zones,” Brandi explains. “It’s hard to know how hard to push your child, especially when their circumstances are different. I don’t want him to limit himself by thinking he can’t do something because of his CP. It may be harder, and it may look different than everyone else, but if he wants to do something, we will find a way.” Next in Dylan’s journey, he will continue with PT and follow-up appointments with Dr. Shrader and Dr. McManus to further enhance his mobility and independence.
To other families navigating the complexities of cerebral palsy, Brandi offers heartfelt advice. “First off, know that you are not alone,” she says. “There are other families going through similar things, regardless of what you’re facing. I wasn’t looking to make friends when we came down for Dylan’s first surgery, but I was fortunate enough to make two really great friends during our stay. Finding other moms that understood the ins and outs of CP felt like such a breath of fresh air; it was nice to have someone that could relate to things we are going through.” She also emphasizes the importance of asking questions and advocating for your child. “Don’t be afraid to ask a million questions or stand up for your child or yourself. You know your child best, if something feels off, don’t be afraid to say so. A good team will understand you’re just looking out for the best interest of your child and will do their best to get you the answers you need.”
