Jim Johnson shares his daughter’s on-going journey after suffering a traumatic brain injury. This is her story.
Returning to Mona Shores High School has been life changing for Erin. She was very musical prior to her TBI accident, and being back in that environment has made a huge difference in Erin’s happiness. She often voices along with the other students, sometimes even on pitch.
There are two things that are critically important to Erin Johnson: music and being among friends. She enjoyed playing violin and clarinet and listening to popular music. Erin went to shows whenever she could. Being with her friends made the 13 year old feel like she belonged.
But on Halloween night in 2007, a vehicle struck Erin. She sustained a cranial fracture, a fractured femur, several fractures in her pelvis, as well as lacerations to her liver, and several scrapes and bruises. When we first saw her at the hospital, Erin didn’t look seriously injured. We didn’t know what she was facing.
After being airlifted to Spectrum Health and a nerve wracking 28-day stay in pediatric intensive care at Helen DeVos Children’s Hospital, the picture had become clearer. Erin had survived, but her speech and movement were significantly impaired. She had developed spasticity, which causes muscles to involuntarily contract (shorten or flex) when you try to move a limb, and would need intensive inpatient therapy. We consider ourselves fortunate and lucky to live near Mary Free Bed Rehabilitation Hospital.
The doctors and therapists began work with Erin almost immediately. She received speech, occupational, and physical therapy seven days a week. Slowly Erin began to become more alert and gained more purposeful control.
To battle her worsening spasticity, an intrathecal pump was implanted to deliver a steady stream of baclofen, a muscle relaxant, to loosen up Erin’s muscles. She received evaluations for a wheelchair and assistive communication devices. After four months of intensive therapy, Erin was released.
We had hoped beyond hope that Erin would walk out of Mary Free Bed and return to her life as it had been. That was not to be. Our goal had become to make her life comfortable, livable, and happy. We would continue to work toward as full a recovery as she was capable of.
There were a lot of changes we needed to prepare for, including making our home wheelchair accessible – which took nearly a year and a half. We bought a Kneelvan, a minivan converted for wheelchair transport, and settled into a routine of therapy and doctor visits. Slowly we were able to reduce Erin’s medications as they became unnecessary. When the baclofen pump wasn’t able to fully control her spasticity, she received Botox treatments to help her arms relax. Erin received surgery to lengthen her achilles tendons to alleviate foot drop.
Throughout all this, Erin has remained determined. Known to be a bit stubborn, she’s put this to her advantage, always working hard at her therapy to try to get better. Like any teenager, she rolls her eyes at my wife and I, and uses the quality of her voicing to let us know her emotions.
Gradually, Erin has regained more head and voice control, and taps her feet to music when she hears something she likes. Knowing that being among her friends was important to Erin, we worked with her school district to allow her to attend choir and band classes a few times a week. Once these visits began, we noticed a dramatic improvement in Erin’s demeanor and she has actually increased her efforts in therapy.
In May, Erin turned 18. In June, she will be able to be wheeled across the stage to take part in the graduation ceremony of her peers and classmates at Mona Shores High School.
Currently we’re investigating an eye-gaze based augmentive communication device, which we hope will allow Erin to communicate her own words for the first time since that Halloween night in 2007.
We have come a long way in four and a half years. We have a long way yet to go.