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Arlee Rodgers tackles cerebral palsy with determination and a lot of spunk

Pediatric physical therapy assistant Starr VanderHart and patient Arlee Rodgers bond over shared interests, including music and dancing.

Starr and Arlee show off their matching rings.

Arlee and Dr. A.J. Rush take a moment to goof around and share a laugh in the pediatric therapy gym.

Arlee works with occupational therapist Jennifer Ancans.

Arlee enjoys aquatic therapy in one of two therapy pools at Mary Free Bed. The buoyancy of a warm-water pool makes it an ideal place to practice strength training, balance and other skills.

Guest blog: Jynel Rodgers shares her daughter, Arlee’s, story and how Mary Free Bed’s pediatric rehabilitation specialists have helped put her on the path to independence following Selective Dorsal Rhizotomy surgery to treat cerebral palsy. Scroll to the bottom of the page to watch her heartwarming video story. 

Arlee is 7 1/2 years old. She loves to dance and sing songs she writes herself. Arlee is good at math, but prefers writing and spelling. She has blue eyes with long eyelashes and the cutest smile with a tooth missing, front and center. Arlee also has cerebral palsy, but CP doesn’t have her. Arlee has big dreams, and Mary Free Bed Rehabilitation Hospital is helping her achieve them.

Arlee was born seven weeks early. She came into this world fast and loud, surrounded by a crowd of doctors and medical staff watching in wonder. Her birth was the perfect indicator of her personality – determined to do things on her schedule with a shine that makes everyone take notice. Arlee spent 26 days in the neonatal intensive care unit at Sparrow Hospital in Lansing. When she came home two days before Thanksgiving, she was smaller than her older sister Sophie’s babydoll, but without any known negative consequences of her early arrival.

Arlee’s first year of life was pretty typical. She was a little behind hitting her milestones, but we figured that was due to her prematurity. We took her to a well-baby checkup when she was about 15 months old, and her doctor was concerned that she didn’t use her legs to crawl and wasn’t pulling herself up to stand. He sent us to a get an MRI and to a neurologist, who confirmed Arlee had CP.

We soon settled into a routine of physical and occupational therapy. Arlee always worked hard for her therapists. She was occasionally sassy and headstrong, but with a little creativity on the part of her therapists, Arlee began meeting every goal, including walking with a walker.

Last year, Arlee hurt her foot. She loves to dance and jump around, and I imagine she just landed wrong. We didn’t think it was anything serious, but it hurt her enough to interfere with therapy. Her PT recommended she see an orthopedic doctor to look at her sore foot and also to check her hips. CP causes extra tightness or tone in the leg muscles. That prevents proper bone alignment and makes it harder for Arlee to stand straight and to balance. Improper bone alignment could also cause her hips to dislocate. Fortunately, Arlee’s foot healed before her appointment, and her hip alignment was fine. We were also fortunate that the doctor referred us to Dr. Rush at Mary Free Bed.

Dr. Rush is a physical medicine and rehabilitation doctor. His job is to coordinate care of his patients with other medical professionals to help the patient achieve his or her highest level of function. This is important, because before we met Dr. Rush, we were only using therapy to stretch Arlee’s muscles.

Dr. Rush had a plan to physically change how Arlee’s muscles worked. He recommended we try Botox injections to inactivate the muscle fibers causing tightness that prevented Arlee from straightening her legs – and I joked that it would also prevent wrinkly knees.

The procedure was pretty painless due to the medications given beforehand. One was rubbed on her skin to numb it, and the other was squirted up her nose to relax her. Arlee was not a fan of the one squirted up her nose. Within three days, we noticed a difference. Arlee was able to stand so much straighter. She had better balance and a much smoother gait.

Botox was a success, but there was a downside – it typically lasts about three months and then needs to be repeated. Patients can build up a tolerance to it, making it less effective over time. Add that we would have to drive an hour each way from our home near Lansing for the injections – combined with Arlee’s unwillingness to have anything squirted up her nose ever again – and Botox didn’t seem like a long-term solution. But not to worry, Dr. Rush had a plan.

Because Arlee had responded well to Botox, Dr. Rush said she would be a good candidate for Selective Dorsal Rhizotomy. SDR is a surgical procedure that severs the nerves that cause the muscles to be tight. This permanently removes the tone, but the muscles are left very weak and require intensive physical therapy to strengthen them afterward.

Dr. Garton and a team at the University of Michigan Health System’s C.S. Mott Children’s Hospital in Ann Arbor performed Arlee’s six-hour surgery on Jan. 13. She was required to lay flat for 48 hours and then therapy began. Arlee saw therapists at Mott, but our plan was to transfer to Mary Free Bed for therapy and for Dr. Rush to oversee her care.

We arrived at Mary Free Bed on Jan. 17. This is where the story really gets good. Even though we arrived later in the evening, we were greeted by the nursing team, and our admission went smoothly. Arlee woke up the next morning to breakfast in her room followed by an occupational therapist who helped her with her first shower in six days. Arlee’s typical therapy day began at 8:30 am and continued until about 3:30 pm with some short breaks and a break for lunch.

On her first day, she worked on standing. She was only able to stand for eight seconds with her therapist’s help. Within a couple of days, she was taking steps. She progressed so quickly! Arlee worked with physical, occupational and recreational therapists. Therapy helped strengthen her legs. They did exercises to encourage Arlee to take steps, heel to toe. She progressed from standing to walking with help using parallel bars to walking with her walker to walking with arm crutches. She is working on walking with one crutch, and her ultimate goal is to walk without any assistance. I know she’s going to smash this goal, too.

We left Mary Free Bed on Feb. 21, five weeks after we arrived. Arlee wore her green graduation shirt filled with encouraging messages from all of the friends she made during her stay. Going home is bittersweet. Her progress has been amazing, and I’m excited to see how she continues so improve with outpatient therapy at home.

But Mary Free Bed is so much more than therapy. Their Child Life Specialist helped Arlee with her fear of having the stitches removed from her back. She also invited Arlee to try wheelchair basketball and join the adaptive cheerleading team.

Arlee’s recreational therapist helped her arrange flowers, took her swimming in the therapy pool and introduced her to adaptive bicycling. Arlee formed a singing group – Arlee and the Crowns – with some volunteers. She also planned and executed a surprise birthday party for me, complete with invitations, cupcakes, gifts and a playlist of my favorite songs, a task that involved many people involved in multiple disciplines.

All of these things were done with Arlee’s happiness and wellbeing in mind. Many of the activities also involved standing or other motions geared toward her goal of independent mobility. That’s right – they snuck extra therapy into the fun, and she loved it.

Every person we had contact with went above and beyond their job duties to meet our needs. The crew at Mary Free Bed has become an extended family. We are grateful for their care, and we can’t wait to come back to show them Arlee’s progress and to reunite with our friends.

2 Comments

Mitch Barr

Arlee, you rock, girl! It’s great to hear you’re doing so well. Can’t wait to see you back in the Gait Lab next year to measure your progress!

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