Ellie is such a motivated young girl who is determined to move her body so she could accomplish all her (plus mom and dad’s) goals.
Ellie has been a fighter since day one. She was exposed to drugs and alcohol in utero and diagnosed with Spastic Cerebral Palsy. The Drew family chose to open their arms and hearts to this sweet and loving baby. “Our oldest daughter has cerebral palsy, so when we heard about Ellie’s story, we just knew that we had the resources in place to help her,” highlighted Ellie’s mom, Kimberly. Ellie’s family adopted her at birth and have always ensured she was set up for success.
At 9 years old, Ellie needed a Selective Dorsal Rhizotomy procedure to help decrease muscle tone and stiffness. This spinal operation requires time spent in a hospital followed by therapy.
Ellie’s surgery impacted her ability to move the way that she used to. After spending a week at a local hospital, Ellie was transferred to Children’s Specialized Hospital (CSH)’s inpatient rehabilitation facility in New Brunswick, New Jersey for inpatient therapy. “After surgery, we weren’t sure where to go, but the hospital recommended CSH because it was a closer option,” noted Kimberly. “CSH had everything we needed without our family being too far apart.” Once admitted, Ellie received 24-hour medical and nursing care, plus intensive daily physical, occupational, speech, and recreational therapy.
Rehabilitation Journey
During physical therapy, Ellie worked closely with physical therapist, Gianna Pianoforte, to learn to engage her muscles in new ways to build better movement patterns and strength to achieve her functional mobility goals. “Ellie is such a motivated young girl who is determined to move her body so she could accomplish all her (plus mom and dad’s) goals,” highlighted Gianna. “At the time of her admission, Ellie required assistance to sit, during our sessions she worked on overall strengthening to be able to crawl reciprocally and transition to a standing position, and even climb the Treadwall.”
Ellie continued to show progress by participating in treadmill training using the ZeroG® Gait and Balance System during co-treatments of physical and occupational therapy to work on the quality of her gait pattern. “We always used a mirror so Miss Ellie could see how fabulous she was walking,” emphasized Gianna.
In occupational therapy, Ellie worked with occupational therapist, Jocelyn Dulanie, on gaining her sitting balance again. She had to learn how to use all her new muscles and how to move with different motor patterns so she could reach her goals. “Ellie showed up to every session with a smile on her face, ready to work on whatever we threw at her,” noted Jocelyn. “She has the brightest personality with a funny sense of humor. Her positivity is truly contagious and working with her was the highlight of our day.”
Dave Savage and Ellie
Ellie also grew in her communication skills. “She is a child who couldn’t understand why she was in pain and with the cognitive deficit, it’s hard to explain. Her resilience and perseverance to get through it and learn how to communicate with her iPad was pretty impressive,” highlighted Kimberly. “She made so many friends and for the first time, with the use of her iPad, she asked another child to hang out.” “Working with our super girl, Ellie and her incredible family was amazing,” noted Gianna. “She is the best and her family really set her up for success and always had her ready for therapy, even in special custom-made t-shirts themed for her therapy sessions,” added Jocelyn.
Reflecting on Inpatient Rehabilitation
“Day in and day out, I was so impressed with Ellie’s therapists and their energy. I was tired after and I didn’t even do anything. They are physically involved, they’re not just doing the therapy, but they are coaching and motivating Ellie while giving me tools,” stated Kimberly. “As a parent, you’ll do anything for your child, but in these situations, you’re so limited with what you can offer, so any time that they would take that extra minute to invest in giving a little tip or tool gave me something tangible and empowered me as a parent.”
“Ellie had a cheerleader on every floor. From the security crew at the front to the rehabilitation technology team. Everyone knew her name and took the time to say hello,” noted Kimberly. “It was like every time you turned around someone was going the extra mile to connect with your child and give them a moment that’s not about their disability or what they’re going through, it was just doing life and celebrating who they are and seeing them as a person.”
Ellie was ready to head home to be with her parents, older sister, and two older brothers after spending five weeks at Children’s Specialized Hospital. She is continuing to progress and meet milestones. She can stand, bear weight for almost two hours, enhanced her toileting, learned how to climb on the couch, and improved her overall flexibility.
“We’re so proud of all her progress, which is truly a result of how dedicated, loving, and involved her family is, in addition to her innate drive and motivation to move,” stated Jocelyn. “Ellie’s mom left us the most beautiful note that I still read daily, it makes even the toughest days at work better,” added Gianna.
Advice for Parents/Caregivers
When asked if she had advice for other families going through similar situations, Kimberly highlighted, “It’s really important to take each day one day at a time and try not to look too far ahead because each day has a challenge and when you get to the end of that day, and you’ve met that challenge, you can feel good about it.”
“You also need to be mindful about gratitude and perspective. Be intentional and take moments for yourself, which I have to say that the Child Life team at CSH really helped me with. There were days when I needed a shower or just 20 minutes to get a meal and not be with Ellie and that team helped to get me through the next day.”
Jocelyn Dulanie, Ellie and Gianna Pianoforte
Learn more about Children’s Specialized Hospital Acute Inpatient Rehabilitation.