Joy seems like a fitting name for a little girl who loves to smile. The little girl from Portage la Prairie has spent her whole life at Winnipeg’s Children's Hospital and soon, if her family can find the medical support she needs, she'll be going home.
Nurses call her “Joy to the World”. Recently the two-year-old, whose health has always been complicated, has been able to enjoy some of life's simple pleasures, like eating on her own.
"She's playing. She’s walking. She’s Running. She's climbing,” said Joy’s mother Melanie Finnimore. “The next big thing is, would she be able to vocalize with a special speech valve?"
Joy was born with cystic hygroma. It's a malformation of the lymphatic system that causes fluid to build up within cysts in and around her neck. Without a tracheostomy tube, her airway would close.
"We're also getting really excited because Portage will be in our future as soon as we get the nurses that we need," said Finnimore.
The final hurdle on the path home has been a difficult one to get over. The Finnimores need to find three nurses who can care for Joy overnight.
"At night, we put her on a special machine that reads her oxygen levels and her heart. So that's why we're looking for that position at night," said Finnimore.
Joy’s mother said since the posting went up in November, only one person has applied.
“I think hearing about the critical airway might be a scare to some, but honestly, once that trach is in, she's just like any other toddler."
A toddler who has undergone two operations to remove about four pounds of tumour around her face, and whose mother has lived at Ronald Mcdonald House for two years to live close by.
"There's still quite a journey. With her condition, it's managed. It's not something that a magic wand takes everything away," said Finnimore.
(Source: Melanie Finnimore)
In February, Joy started taking a new medication, which Finnimore hopes will improve her condition.
The family opened up the job posting to accept licensed practical nurses to hopefully attract more applicants.
Finnimore said she has mixed emotions about the prospect of taking Joy home to Portage. While she has been staying at Ronald McDonald House, she has been comforted by the fact that the hospital is close by.
“Nervous and excited and all of those emotions all rolled up into one,” she said.
The family has an action plan in place in case of emergencies once Joy is back home, a place she has only been able to visit about eight times in her life.
Joy is expected to have several more operations.
In the meantime, her family hopes she can grow up at home.
With filed from Cameron MacLean
