Watch me, mom!
How holistic care helps a young girl defy all odds
“Accepting the diagnosis is the challenge. But once you realize how beautiful things can be, a diagnosis is just a word. Our kids have done amazing things—they have exceeded all expectations placed on them. You have to look at what your child can do and give encouragement. It’s all about their abilities, not their disabilities.” – Kris Rohrbough, Rylee’s mom
Everyone who meets 5-year-old Rylee is drawn to her spirited nature. She is fire and fun wrapped in a tiny package. In fact, one would never know she has an extensive medical history, especially a diagnosis that includes cerebral palsy.
“Rylee is very tenacious,” said her mom, Kris Rohrbough. “If you tell her that she can’t do something, she’ll tell you, ‘Watch me!’”
And it’s this spirit of perseverance that defines Rylee’s journey at Cook Children’s.
After a complicated pregnancy, Kris delivered Rylee seven weeks early. She and her husband, Phill, knew Rylee would have challenges ahead. During Rylee’s routine heel prick, the doctors couldn’t find any trace of blood sugar. After admittance into the Neonatal Intensive Care Unit (NICU), she was placed on a continuous positive airway pressure (CPAP) machine. A CPAP delivers pressurized air to prevent breathing pauses during sleep. Rylee had very high levels of lactic acid, which meant her family couldn’t touch her for the entire first week of her life.
At 26 days old, Rylee was released from the NICU.
“I remember walking into the NICU that morning,” Kris recalled. “It was Memorial Day weekend, and a nurse came running up to us. She said, ‘Rylee gets to go home today!’ We snatched her up pretty quickly and brought her home. She was so tiny in her car seat, but arriving home with her was the best feeling.”
Rylee’s Cook Children’s journey started at her first pediatrician’s visit. At first, she was a “normal” baby, but soon her family started noticing some growth and developmental delays. When Rylee’s eyes began crossing, her pediatrician referred them to an ophthalmologist, who recommended magnetic resonance imaging (MRI) to find the cause behind her strabismus, a misalignment of the eyes. Her MRI showed spastic diplegia, a form of cerebral palsy, characterized by tight, contracted muscles, especially in the lower extremities.
“Because it was during the pandemic, we received Rylee’s MRI results before our follow-up appointment,” Kris said. “When we did have that appointment, we were ready for the official diagnosis. Our son has autism, so we’re well versed in the world of special needs. Since we were mentally prepared to hear cerebral palsy, we were ready for our next steps and how we could get started with Rylee’s treatment.”
It was during this appointment that the Rohrbough family met Rebecca Luke, D.O. and Kristen Taylor, D.O., both pediatric neurologists at the Jane and John Justin Institute for Mind Health at Cook Children’s. Rylee had already been in physical therapy for over a year and was learning to walk, run and play just like any other kid. When Dr. Luke and Dr. Taylor saw Rylee, what they saw was a walking miracle.
“When Dr. Luke came in to deliver the diagnosis, I remember vividly she had her laptop in hand, looking back at Rylee, and said, ‘This isn’t the same kid. I came to talk to you about vans, accessibility and wheelchairs. The kid on this MRI shouldn’t be able to stand and take steps,’” Kris said.
Since Rylee’s diagnosis, she has undergone surgeries to correct her strabismus, as well as her left leg to extend the tight muscles and tendons to help her walk better. Just two days after her surgery and in her blue cast (because who doesn’t want to be Pete the Cat™?), Rylee attempted to walk again.
She is routinely fitted for new supra malleolar orthoses ankle braces that aid in foot alignment and works with Dr. Taylor, at the Cook Children’s Cerebral Palsy Clinic.
She recently suffered from rotavirus so severe she was hospitalized for five days, but none of this stopped
Rylee from being a kid who loves to dance, sing and be with her family.
“You can tell Cook Children’s is a team from top to bottom,” said Phill, Rylee’s dad. “Because Rylee was in isolation during her hospitalization, she gravitated toward the nurses. We even had someone from Environmental Services take the time to talk and play with her. Everyone on staff, no matter their position, stepped in where they felt they were needed.”
During that stay, when Rylee told the nurses that she wanted to be a nurse when she grew up, they made her dreams come true! Rylee was made an honorary nurse, complete with her own Cook Children’s badge that she wears every day, along with her little stethoscope, with pride.
“It’s always hard as a parent of a special needs child,” said Kris. “Accepting the diagnosis is the challenge. But once you realize how beautiful things can be, a diagnosis is just a word. Our kids have done amazing things—they have exceeded all expectations placed on them. You have to look at what your child can do and encourage that. It’s not about their disabilities; it’s about their abilities. We are so blessed for everyone at Cook Children’s for loving our kids and fighting alongside them.”