Ready to Live the New Normal with Gusto

After a fun-filled holiday season in 2018, 14-year-old Rae began feeling sick. By Dec. 28, she couldn’t feel her legs. A blood stream infection quickly took over her body and resulted in the loss of her lower legs as well as part of her left hand and fingers. For 106 days, Rae was in the ICU fighting for her life.

That same fighting spirit, combined with intensive therapy at Ranken Jordan Pediatric Bridge Hospital, is helping Rae regain strength and mobility. When she arrived at Ranken Jordan in April, she couldn’t move her arms or legs.

“Rae went from playing basketball and volleyball to a wheelchair nearly overnight,” says Nikki Toennies, Rae’s mom, shaking her head in disbelief.

Pushing for Hope and Independence

After three months at Ranken Jordan, Rae can now sit up on her own without help. She is proud of her progress. “Now I can wave,” Rae says, demonstrating her queen-like wave. “I can also do more with my left hand so I can use my phone and laptop. And I’m finally able to brush my teeth and wash my face on my own, too. I feel happy and thankful.”

Ranken Jordan therapist are helping Rae’s progress through a variety of approaches. Thankfully, Rae says she like to stay busy because her typical day is full of various therapies: occupational therapy, physical therapy, speech therapy, music therapy, art therapy, recreational therapy and pool therapy. “Then I snooze,” Rae says with a laugh.

Rae has adapted well to her wheelchair but doesn’t plan to stay on wheels for long. In mid-July, Rae was fitted for prosthetic legs and stood for the first time in months.

“I’m thankful they have the technology to help her walk again,” Nikki says. “The goal is for her to walk out of here. I didn’t believe it at first but now I do.”

Nikki says she realized it was possible for Rae to walk again when she watched Rae in pool therapy for the first time. “I saw she could move all her limbs. Her muscles still work so now she just needs to get stronger. That gave me hope.”

With positive results, Rae’s favorite activity at Ranken Jordan is swimming. She also enjoys golf, outings, St. Louis Cardinal games and is part of a cooking group.

“Rae is still really independent and determined to live the new normal,” Nikki says. “Rae also wants to play sports again. Ranken Jordan keeps us positive and the therapists push Rae to get her back to the best she can be.”

Nikki is grateful for the care the Ranken Jordan team has given to her whole family, including Rae’s siblings who are 12 and 17. “Ranken Jordan has activities for them, support groups for parents and siblings, Family Fun Day, and pet therapy,” Nikki says. “Now Rae says she wants a Labradoodle.”

Living Out Loud

After being on a ventilator and having a tracheotomy for three months in the ICU, Rae lost her voice. Speech therapy at Ranken Jordan is helping to strengthen her vocal cords.

With school on the horizon and teenage banter waiting for her, Rae has strong motivation to get her voice back. During the summer, two of her teammate friends from school visited Rae every week from their hometown of Germantown, Illinois. These friends say Rae is still as spunky as ever. The trio jokes and laughs together like all teenagers with Rae right in the thick of it—even with a soft voice. But she’s ready to live out loud.

“Ranken Jordan is giving us an opportunity to come home and live a new normal,” Nikki says. “For us, this is a new chapter. I’m thankful to still have Rae. My strength is through her—she keeps me going.”

After Rae goes home, she will continue to come back to Ranken Jordan for outpatient therapy.

“This experience has changed my outlook,” Rae says. “I used to want to be an orthodontist but now I want to be a child life specialist like those who have cared for me at Ranken Jordan. And for once, I’m ready to go back to school.”