REHAB CASE STUDY

Written by: STEFANIE SUKSTORF LAURENCE, OT REG. (ONT)

Who initiates the decision to pursue power mobility for a child? A parent with their child’s needs at heart? A therapist with a clinical feel? A sales rep with a questioning mind?

And what roadblocks prevent the pursuit of power mobility from moving forward? Physical, cognitive or emotional shortcomings of the child? Fear or lack of commitment by team members? Accessibility barriers? Cost? Lack of opportunity?

Whether verbalized or unspoken, all these factors arise when evaluating a child for seating and mobility — which brings me to my story about one little girl.

I met Lydia in October 2018 after being asked to assist in creating custom seating for her. At the time she was 3 years old, with a diagnosis of nemaline rod myopathy. She was using a ventilator and fully dependent for her care secondary to global hypotonia. But she had a twinkle in her eye and a non-stop chatter of questions, comments and songs - albeit muffled due to her profound muscle weakness. She lived at home with her parents and dog in a small split-level bungalow in Northern Ontario. She was supported by both the care team at her local children’s treatment center and community mobility supplier. But she was at least an eight-hour drive (or a non-urgent ambulance flight) from any provincial treatment center that was experienced with a client of her complexity.

Up to this point, she had been using a Thomashilfen adaptive stroller for her positioning and mobility but, as she had grown, the local team reported the seating system was no longer providing adequate trunk support (See Figure 1). I flew up to assist with the shape capture of a custom seating system, and the prescription of a new manual tilt wheelchair that could accommodate her ventilator, humidifier, suction machine, cough assist and associated medical supplies (See Figure 2). The idea of power had been floated by her mother, but more to accommodate the volume of her equipment than to provide independent mobility. Funding for power was not an option as she could not drive a power chair herself.

Despite her profound weakness, Lydia had the ability to manipulate small, light toys with her fingers when her arms were well-supported. Her mom, Megan, fashioned small supports under her wrists that could easily slide on her tray to enable lateral movement of her hands. This minor adaptation was just one of many small but ingenious creations that mom fabricated to capitalize on Lydia’s abilities.

Fast forward to October 2021. In the intervening three years, Lydia had continued to thrive and grow. She was followed at a provincial children’s center twice a year for medical needs, and the therapy team there, excited by the potential of new modular equipment, had prescribed a modular cushion and back with lateral trunk support for her manual tilt chair. Despite their best efforts, the back was too soft and just not able to provide enough support through Lydia’s trunk to maintain her comfort and breathing. Mom inquired about going back to a custom seating system.

Lydia was scheduled to be at the provincial treatment center for one week for her biannual medical appointments. The plan included assessment at the seating clinic for her ability to learn to drive a power chair. Government funding in Ontario only covers one primary wheelchair for mobility and the seating mounted in that chair. I initially met with mom and the seating therapist to discuss options and outline a game plan.

Lydia was demonstrating promising skills in maneuvering a power chair. The seating therapist was able to jury-rig a seating system into a chair with power tilt, and trials with a micro joystick were underway. Numerous set-ups were trialed to support her upper extremities to maximize her limited strength and range of movements. They even included using those little wedges mom designed previously. These components were finicky but were a better option than the overhead arm slings mom had fashioned to create gravity eliminated movement for Lydia in the manual chair (Did I tell you this mom really should be considered an honorary occupational therapist?) (See Figure 3). Scan the QR code located at the end of the article to view videos of Lydia driving during the assessment.

The dilemma was what to do about her seating. Should a power chair be prescribed with new seating – but she was only in the initial stages of use – or should the seating be prescribed for her manual chair, potentially interfering with getting new seating for the power chair in the future?

Compounding the dilemma had been COVID. The family lived in a very small split-level house with very little room for a power chair to maneuver. Lydia would continue to need a manual chair, and they did not even have a garage in which to store an extra chair. House prices had soared during the pandemic, pushing the dream to move to a more accessible home into the distant future. Due to Lydia’s medical complexity andCOVID, she was not attending in-person school, so utilizing the school as a place for driver training was out of the question, even if we could secure a chair for trial. And winter had already descended on her home community, so outdoor training was also off the table for at least another six months, as were community settings where she might risk virus exposure.

All options were laid out to the parents. I continue to be in awe of this family’s dedication and resourcefulness for their daughter as they processed information, asked questions and problem solved barriers. Funding windows, product options, using their accessible van to store an extra chair, developmental goals – nothing was off the table. The dilemmas this family were mulling over were not unique. We just didn’t tend to see all of these barriers in one client situation.

In the end, the decision was made to proceed with a new seating prescription for the manual wheelchair. The prescribing therapist did not feel comfortable enough to prescribe a power chair with power tilt and all the customizations Lydia would require at that point in time. The modular cushion was working, so we only needed to mold her for a new custom back. Hardware was selected to allow mounting of this back to a power chair in the future, if needed. I had hoped we could consider a different custom back to allow a little more ability to change on the fly but respected the family’s wish to have something tried and true.I suspect distance from resources certainly played into their decision.In the interim, her old custom molded back was resurrected. When we molded for the new back, I took a plaster cast of the current shape. This was used to guide cutting and carving to accommodate for Lydia’s growth – less than ideal, but more supportive than the modular back.

The plan is to retry the power chair at her next biannual appointment.We are hoping to have the new back in place and gain benefit fromthe support it can offer. Would the plan have been different if shelived closer to resources? Perhaps, but one thing is for certain, thecommitment by her family and team to achieve the best outcome forLydia is unrivaled (See Figure 4).

Scan the QR code to watch thefollowing videos:

CONTACT THE AUTHOR Stefanie may be reached at STEFANIE.LAURENCE@MOTIONCARES.CA

Special thanks to the seating team at Children’sHospital in Eastern Ontario.

Stefanie Sukstorf Laurence is an occupational therapist who has been working with people with special needs in a variety of settings and roles for over 40 years; the last 34 as an occupational therapist. While the terms wheelchair lady, commode queen, seating specialist and equipment geek have all been used as worthy descriptors, she is the clinical educator for Motion across Canada. When she’s not on her soapbox at colleges, universities, group homes, hospitals and conferences across North America and even as far as Europe, you can find her with her arms wrapped around a client helping to create a custom seating system or elbows deep with a team to sort out a challenge. Laurence is a NRRTS Registrant and NRRTS.