‘An absolute rock star’: Seven months after leaving the hospital, Everleigh Hall is making ‘amazing progress’

Brodi Lewis doesn't have a typical New Year's resolution.

Her list isn't marked by the usual goals of eating healthier, reading more, learning a new skill or building a new habit.

The Hamilton mother wants one thing: for her 19-month-old daughter Everleigh Hall to be weaned off her ventilator and able to breathe on her own, unassisted for a majority of the day.

If that were to happen, the family could live a more typical" life - and Everleigh could feel more free.

Being on the ventilator is our biggest feat right now," said Lewis, speaking to The Spectator.

Her trach could be removed. The family wouldn't need nurses. They'd no longer have to pack up five pieces of equipment for a simple stroll down the street. Goals of walking and standing could come closer into view.

Being off of it would mean more of a sense of normalcy ... and we can live as a typical family."

Everleigh was born with Wolf-Hirschhorn syndrome, a rare genetic disorder caused by the deletion of genetic material near the end of the short arm of the fourth chromosome.

In her case, Lewis said Everleigh was born with poor muscle tone, narrow airways, a cleft palate, holes in her heart, clubbed feet and developmental delays. She also requires a ventilator.

The tot spent nearly her whole first year between the neonatal and pediatric intensive care units at McMaster Children's Hospital. She faced a number of setbacks, including cardiac arrest as well as a nearly collapsed lung.

But since finally coming home from the hospital on May 6 - nearly a year after she was born on May 25, 2019 - Lewis said Everleigh has made amazing progress."

Everleigh is an absolute rock star, all on her own," said Lewis. From the second she got home, it seemed like every week there was something new."

Lewis said her daughter can now hold her head up and sit unattended for just over two minutes. She can roll over, do tummy time and, if Lewis or her husband Austin Hall aren't looking, she sometimes manages to wiggle her way across the room.

Everleigh is also on her way to learning how to walk. Born with club foot, both legs are currently in casts to correct them. Once they're removed, Lewis said the family will get a stander and a walker.

It's a stark difference from the hospital, where Everleigh spent most of her time on her back, laying placid."

Her muscle tone has improved so much that it means those things are really possible," said Lewis.

Everleigh has started to communicate and engage with people. Initially, doctors believed she would be both blind and deaf, but Lewis said her daughter tracks with her eyes and she's been diagnosed with hearing loss.

Her sign language vocabulary is up to six words: hello, mom, dad, food, more and thank you.

She's caught on very, very well ... especially for a kid that they said was going to be blind, deaf and wouldn't even engage," said Lewis. That's huge for me."

She's off most of the medications she was taking in hospital and is thriving" without them. She's also starting to swallow, which would signal the eventual removal of her feeding tube.

We obviously have a very long road ahead but it's a really huge step," said Lewis.

The road so far has been a roller-coaster" for the family since Everleigh came home - their lives changing around her.

Lewis and Hall spend hours blending and straining food for Everleigh's feeding tube. They play Sherlock Holmes" when something seems to be off. They write down Everleigh's every move to track her progress.

The pair have also had to accept that, in the scary moments, they are just parents - not doctors.

But, every hurdle and anxiety-filled moment has been worth it," said Lewis.

They've gotten to experience Everleigh's belly laugh, which is more like a wheeze, when you tickle her.

She has a relationship with her older brothers, Ryan and Josh, who both absolutely adore" her.

And she has developed a sassy" personality - accompanied by raises of her invisible" eyebrows and funny looks.

It's been an adventure, but it's so rewarding," she said. She makes our job very easy ... we would do anything for her."

Everleigh has also taught Lewis a great deal about herself.

Lewis said she feels like a better mother." She has learned how to be more patient and she feels smarter, as though she can better advocate for the daughter who empowers her everyday.

Everleigh has also taught Lewis to be more aware" of what other families with medically fragile children go through - something she may not have fully considered or realized before she was put in the same position.

That little girl has humbled me," said Lewis. She's taught me more than I could ever teach her, truly."

And in the year to come, the family is hoping to pay Everleigh's lessons forward.

Lewis said they plan to create the Everleigh Norma Jane Project, which will focus on putting together boxes for families coming home from the hospital with medically fragile children.

The bundle will include things like whiteboards and dry erase markers, clocks, a label maker and cord ties.

They're also going to make up care packages for families still in hospital, starting with families staying at McMaster.

Those will include gas cards, Tim Hortons gift cards and anything else needed to make their stay a little easier" - especially as the pandemic continues.

We know firsthand how difficult it is," said Lewis.

Fallon Hewitt is a Hamilton-based reporter at The Spectator. Reach her via email: fhewitt@thespec.com