Heather Latter
Over the past year, “Baby Ben” has grown and undergone plenty of positive changes, making his second birthday certainly one to celebrate.
Born Nov. 10, 2007, tiny Benjamin Marr arrived 15 weeks early and weighed just one pound, four oz.
He would spend the next several months in hospital in Winnipeg until finally coming home to his family in Emo in the spring. The family then moved to Fort Frances last year to be closer to the hospital.
“It’s been a great year and Ben is doing really well,” enthused his mother, Jennifer. “Now that he’s getting older, they are able to do more tests and we’re learning more about him.”
While Ben still heads back to Winnipeg and Thunder Bay for regular check-ups and testing every month or so, there has been good news and progress. He is wearing his glasses daily to improve his eyesight, can cruise around the furniture, and is beginning to take some food by mouth.
“He got his first pair of glasses when he turned one, but four months later got a second pair because his eyes had changed and he needed a stronger prescription,” Marr explained, noting it also took several months for her son to become accustomed to wearing his glasses.
“At first it was a struggle to keep them on because he’d always want to take them off,” she said.
But now Ben happily wears his glasses—and the new gift of sight has been extremely beneficial to him.
For instance, being able to see has helped with his physical development. Ben began to crawl in April and in August began cruising around the furniture.
“He’s now playing, getting around, and his favourite thing to do is to look out the window,” Marr remarked, adding that without his glasses, Ben can’t see anything beyond his arm.
Marr and her husband, Dave, are thrilled with this development since earlier on, there had been concerns about both Ben’s hearing and vision—to the point that doctors said he might even be blind.
However, this summer, Ben officially was diagnosed with moderate-severe hearing loss and received hearing aids at the end of July.
“But it’s been quite the struggle to get him to wear them,” Marr admitted, explaining that not only are they difficult to get in, but they also are small and easy to lose.
In the past few months, Ben’s hearing aids have gone missing twice—once in Winnipeg, where luckily they where discovered hanging from the stroller, and more recently at the local hospital, where they accidentally had gone through the washer and dryer there.
Then they needed to be sent away for repairs.
“We tried being creative with ways to keep the hearing aids in his ears,” Marr said, noting they even constructed an arm brace from popsicle sticks and bandages so Ben wouldn’t be able to bend his arms and get them out.
She said Ben is supposed to wear the hearing aids all day, so she gladly would accept advice from anyone who has an idea for keep them in his ears.
Still, Marr doesn’t blame her son for not readily accepting the hearing aids.
“It amplifies everything, so you can understand how that would be scary and overwhelming to him all of a sudden,” she reasoned.
“He gets overstimulated and upset.”
Without the hearing aids, Ben only can hear sounds within about three feet of him. And his left ear is stronger than his right, so Marr noted that when he’s not wearing his hearing aids, they try to stay on his left side.
Marr also has began using sign language with Ben.
“He seems to be understanding and responding to it,” she indicated, noting she’s also made a book with people’s pictures and their names and signs, as well as laminated cards with words and pictures for Ben to play with.
Since Ben was born so prematurely, Marr said doctors are not sure if his nerve endings are fully developed, so tests still are being done. But at this point, it’s unclear as to how much information his brain is able to figure out.
But Marr noted that through tests, it’s been determined that Ben’s speech and language is similar to that of a four-month-old.
“As he gets older, we’ll be able to see what he can make out,” she said. “We do know he gets some of it, but one day he might be able to make out everything we say.”
Ben also has struggled with his weight, now weighing in at 20 pounds. He’s almost always been fed through a gastric feeding pump—a tube that’s hooked up directly to his stomach—and previously had struggled with reflux, throwing up a lot of his formula.
So this summer, Ben had surgery on his stomach to make it so he can take food in, but not allow it back up.
“He wasn’t getting what he needed nutrient-wise,” his mom explained, although deciding to do the surgery was a difficult one because of the risks involved, such as becoming paralyzed due to the spinal.
“But he did super,” she enthused. “It was the fastest he bounced back.”
After spending a week in a Winnipeg hospital, Ben was back at home and thriving. He now spends just half an hour, every three hours, on his feeding tube as opposed to the 18 hours a day it previously had become.
He’s gaining more weight and even starting to take some food by mouth, as well as sipping from a cup.
“His cousin is a few months older and Ben does stuff to keep up with him,” Marr noted. “He tries really hard and we’re so lucky.”
And even though Ben has suffered with pneumonia, as well as several colds and ear infections this past year, it hasn’t been enough to hold him down.
“He’s come so far in a year,” Marr said. “When he takes one step back, he takes two steps forward.
“And we’re so happy.”
Marr also is thrilled to be able to stay home with Ben to give him the care, stability, and routine he needs.
“With everything he’s gone through, I can’t believe how much he smiles,” she remarked. “It makes it so much easier to go through the days.
“He’s such a happy little boy and we love him so much.”
