Leila’s home! A grateful family’s new normal
Six months after the crosswalk accident that changed her family’s life, Kairry Bui says now that her daughter Leila is home, the family can try to return to normalcy.
“We’re still on a great high that she’s at home,” Kairry said. Leila returned home on June 8.
“That’s what we’ve been wanting for a very long time. We’re just trying to find the routine and find a normal in this non-normal life that we’ve been leading.”
The best nights, Kairry said, are when the 11-year-old and her three siblings cuddle together on their parents’ king-size bed and watch a movie.
But Leila is still far from the bouncy and enthusiastic kid she was before Dec. 20, when she was struck by an SUV in the crosswalk in front of her home. Her severe brain injury means she is in a near-coma, leaving her unable to communicate or move her body.
Leila is in a wheelchair and needs constant medical care.
Respite nurses come to the home three nights a week to look after Leila while she’s sleeping, to turn her to avoid bedsores and to make sure there are no problems with her breathing, which is done through a tracheostomy.
On the other four nights, Kairry and her husband, Tuan, look after Leila in shifts. Kairry takes the night shift, then at dawn her husband takes over and she gets a few hours of sleep before he leaves for work.
Kairry has been on extended leave since the accident and recently got approval to work from home so she can look after Leila.
Because Leila’s brain is not connecting with her body, her arms and legs tense up, causing muscles to harden. Kairry has been taught stretches to relieve that tension and an occupational therapist visits the home twice a week to continue the rehabilitation Leila received during her two months at Sunny Hill Health Centre for Children in Vancouver.
There, doctors and neurologists did weekly tests to determine Leila’s neurological response.
Doctors ring a bell by Leila’s ears, shine a flashlight in her eye, pinch her, call her name or place a cotton swab in her nose to see if there’s any response.
At first, Leila’s reactions were inconsistent, meaning any response could be a reflex.
But after a few weeks, doctors noticed more consistency and Leila was moved from “moderate coma” to “near coma.”
Now that Leila is being cared for at home, doctors told the family to ensure Leila is constantly stimulated.
Kairry explains what she’s doing when she’s brushing Leila’s teeth, or washing her face or changing her clothes.
They talk to her at the dinner table and her siblings, six-year-old Jace, nine-year-old Myla and 14-year-old Quynh, play with her and cuddle her.
“I carry her in our bedroom and hold her while we’re in our king-size bed, watching a movie,” she said.
On the weekend, Myla, Leila’s “bestie,” grabs the newspaper and reads her sister the comics.
Jace comes home from school and tells Leila everything he learned that day.
The family is realizing how expensive it is for Leila’s medical and mobility equipment. A specialized ergonomic chair and a standing frame each cost $7,000 and are not covered by medical insurance because it was not deemed a necessity. Kairry disputes that and feels as if she has to fight for everything her daughter needs.
The community has raised $35,000 through two online fundraisers that helped the family buy a wheelchair-accessible van and renovate a bathroom to accommodate Leila’s wheelchair. The Make A Wish Foundation covered most of the cost of a ramp to the house.
Saanich police have not laid any charges and are still investigating what caused the black SUV to strike Leila in the crosswalk at the intersection of Ash Road and Torquay Drive. After the crash, neighbours put pressure on Saanich council to implement speed reduction measures to stop cars from racing down Ash Road. However, Saanich police crash analysts have not confirmed that speed was a factor.
Teachers at Arbutus Middle School have asked if Leila will be coming back in September. Kairry said she can’t think that far in the future.
“I don’t think too far down the road because I don’t want to lose track of what’s going on right now with her.”
Kairry said the family cherishes each sign of progress, however tiny. “We keep looking for a good sign that she’s starting to change. She still has a long, long way to go. We’re grateful for every step we get to. We’re just going on and appreciating each day we have.”