Year 1: Alexander is at home in a hospital bed set up in the main floor den. Just discharged from the acute hospital following a severe brain injury 4 months ago, his family have been told that he is “not appropriate” for inpatient rehabilitation. His determined mother believes he is “in there somewhere” and enlists a physiotherapist to provide rehabilitation for Alexander. Alexander keeps his eyes tightly shut, arms tightly to his chest and his legs straight and rigid. The therapist makes small talk to gauge the situation and Alexander responds by weakly extending his middle finger; a classic gesture and a good sign. The physiotherapist thinks “we have something here”.
Year 2: It started with recruiting family and friends to help him sit at the bedside, get down on the floor, balance in kneeling. Standing is the big target but the tightness in his Achilles tendons force his toes down and standing on them is near impossible. It turned out he had a severe eye infection (which has since been treated) that caused him to keep his eyes shut. His corneas are damaged though and his sight will likely never be fully restored. His parents and his physiotherapist focus on the basics-sitting, rolling, moving from lying to sitting to kneeling up but it’s tough and Alexander finds it frustrating and painful. He gets angry but they let him vent-don’t chastise; just move on. He begins to say a few words. Alexander’s parents ask the physiotherapist to come once a week. They are paying ‘out of pocket’ so have to ration their funds. They commit to carrying through with the therapists program 5 days per week.
Year 3: There are lots of ups and downs. After many letters and telephone calls, Alexander had surgery to lengthen his Achilles tendons so that he could finally stand with help-lots of help. After his surgery he begins outpatient rehab in a specialty facility three times per week. The therapists use a huge walker with a sling seat and four wheels to help him walk. He also attends speech language pathology, occupational therapy and psychology. He begins walking with a walker around his house. Things are finally starting to happen when Alexander falls at home and breaks his hip.
Year 4: After a slow recovery, Alexander is walking again with his walker. He has had surgery on his corneas and can see a little better. His parents keep fighting for him and don’t listen to sometimes negative opinions they receive from health care providers. They gravitate to the people who are most positive. Alexander starts to go out more and can get in and out of a car. His speech repertoire is about 10 words and he has ‘perseveration’ which means he gets stuck on a thought or phrase. One arm has not recovered and the other three limbs require Botox in the muscles to control spasticity-a condition that causes involuntary tightening of the muscles.
Year 5: Alexander has been volunteering at a busy community recreation complex at the front desk. (Thanks to his mom advocating for him). He speaks to everyone and many stop and chat. At first he found it exhausting to stand for just an hour but now he stays for half a day. In this environment, his speech and language has flourished. He now speaks in short sentences. He exercises at the gym almost every day and has a personal trainer to help. He attends physiotherapy and speech therapy at the outpatient department to work on specific things. He would like to walk with a cane.
Year 6: After completing a 6 month work skills preparation program, Alexander has a job!! He tracks inventory in a small warehouse. It has been tough-so many discouraging times but his family and key health providers have persevered and he is happy with what he is doing.