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Kylie Walleser-Bush made it to double digits on Feb. 10.
“To her, it’s just another birthday, but to us, it’s ‘Thank goodness, another birthday,’” her mom Joan Walleser said.
The Pineville girl is waiting on a multi-organ transplant to give her a small intestine, a liver and pancreas. At just 10 years old, she’s been down this road before.
Kylie was born with malrotation and volvulus, which caused her to lose her small intestine and develop short gut syndrome. She was 17 months old at the time of her first life-saving small bowel transplant. But her body rejected it, which called for removal surgery in 2010.
Birthdays are a big deal to Kylie’s family — and rightfully so.
“We tend to celebrate those milestones big, because we don’t know if we’re promised a prom or a graduation,” Walleser said. “So we celebrate the here and now.”
Memories of past birthdays aren’t so much tainted by the child’s medical history. They are all the more special because of it.
Kylie spent the first half of her second birthday in a Shreveport hospital. She was life-flighted later in the day to Omaha, Nebraska, for medical treatment. She had the flu.
“It just shows how fragile she is even post-transplant,” Walleser said.
Her second birthday party ended up being six months late. But it didn’t matter.
“She needed a party to celebrate,” Walleser told The Town Talk in August of 2008 — and she got one.
“I don’t know how long I have with her,” Walleser said on the day of that party. “But I hope it is many years.”
The mother’s tune is the same today as she looks to next February.
“I hope it’s post-transplant, and we’re celebrating, doing whatever 11-year-olds do,” she said.
This year, Kylie requested a party at Skateville in Pineville. Walleser asked if she remembered how to roller skate. It’s been awhile. Kylie reminded mom she’s older now.
“Now, I can do it without holding anybody’s hand,” she said.
Walleser won’t be surprised if that’s the case. Well, she might be. But Kylie surprising her is nothing new.
In the past two months Kylie has had two surgeries and been hospitalized four times. The last time was two weeks ago. Because of that she was scheduled to make up tests at J. I. Barron Elementary on her birthday. Walleser phoned her teachers that morning because she didn’t think it would happen. Kylie was having a bad morning and tied down to an IV.
But by the afternoon the 10-year-old perked up and wanted to go take her tests. She did and made A’s.
“Even as sick as she is, she still pulls off mostly A’s,” Walleser said. “Her mind is sharp, sharp. But her little body is getting tired.”
Her transplant team knows that her condition is very critical, Walleser said. Kylie is moving up on the waiting list each time she’s hospitalized.
“So we’re just hoping for the call,” she said — and trying not to make that the entire focus of Kylie’s birthday week.
“We’re just celebrating,” Walleser said. “Because we know the medical stuff is coming.”
Kylie’s answers to what her plans are this coming year reflected that. She wants to try out for the cheerleading squad at school and see Disney on Ice, a birthday gift from her big brother and sister-in-law.
“And I can’t wait to have my own car,” she said.
Walleser laughed and said that’s probably not in the cards for her this year.
Kylie turns serious for a minute talking about her first accomplishment as a 10-year-old: singing in her school’s talent show Friday morning. Her song of choice? Fight Song by Rachel Platten.
Mom proudly produces her iPad recording of the performance. As Kylie gets to the end of the chorus, which goes “I’ve still got a lot of fight left in me,” Walleser notes the crowd’s reaction.
“She had a lot of people in tears,” she said.
The upbeat pop song released last year became a favorite of Kylie’s. Her response as to why depends on who she’s talking to.
“Sometimes, she’s just like ‘I just like it. It’s my favorite song,’” Walleser said.
Her response while being interviewed was candid.
“Cause I’m fighting for my life,” she replied.
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