After losing his arms and legs to a devastating illness 2½ years ago, this soon-to-be kindergartner is practicing new skills on his way to greater independence.
By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org
Jeremiah Cox likely doesn’t remember when he could walk on his own two legs, scratch his nose or grab a toy without thinking about it.
All of those movements take calculated effort today, 2½ years after complications from a bacterial infection (resulting in sepsis) stole all four of his tiny limbs and very nearly his life.
But this isn’t a sad story about what Jeremiah has lost; rather, it’s about all that he has gained, all that he has learned and all that he has pushed through since that desperate day when surgeons at Riley Hospital for Children at IU Health determined there was no other way to save his life than to amputate his arms and legs.
Now approaching his 5th birthday, Jeremiah is equal parts joyful and fearless. When not wearing his snazzy new leg prosthetics with the cute kicks attached to the feet or rolling along in his wheelchair, Jeremiah gets around by twisting and scooting on his backside.
He spends every Wednesday afternoon in outpatient therapy at Riley, working on mobility, speech, writing and self-help skills.
Last week, occupational therapist Amy Bercovitz and speech therapist Ashley Finch worked in concert with Jeremiah as his mom, Abby, watched nearby. Exercises disguised as play gave both therapists the opportunity to reinforce skills learned over the past several months.
Bowling, for example, required Jeremiah to adjust his new prosthetic arms (which bend at the elbow now), toss a ball and knock down the bowling pins. For each pin he knocked down, he activated his grabber mechanism on his right arm to pick up a card from the floor and tell Finch what the picture showed.
“What is he doing?” Finch asked. “Um, underwater,” Jeremiah replied. “Yes, he is swimming,” she said. Next card: “What is she doing?” “Drinking milk.” “Good job. She is drinking milk.”
Bercovitz wants Jeremiah to show off his skills with his new dressing tree, an assistive device created by the IU Health 3D printing lab. Like a pro, the little boy scoots up close to the hooks on the dressing tree, using one to wiggle in and out of his little shirt. It can also help him remove his prosthetic arms and his face mask.
“We have been trying to think of ways for him to be more independent with his upper body when dressing because he’s so smart. He learns things so quickly,” Bercovitz said, adding that the dressing tree came out of conversations she had with other team members who wanted to help.
Abby Cox said her son likes being more independent, especially at home, where he has several siblings.
“We can’t even help him with one little thing,” said the young mom. “He’ll sit there until he gets something. He won’t give up.”
Still, she worries about his future now that he will be starting kindergarten in the fall.
“I don’t like it,” she says. “I’m nervous, I worry about other people. That’s my big fear – I’ve protected him this long, but I’m not going to be able to do that at school.”
She takes comfort in knowing that Jeremiah’s older sister will be in first grade at the same school, so he will see at least one familiar face.
If there are any dinosaurs in kindergarten though, Jeremiah should be a happy camper. He eats, sleeps and dreams dinosaurs. Consider this conversation between Bercovitz and Jeremiah during therapy.
“What else do we do in therapy?
“Um, we doing … playing with dinosaurs.”
“What’s your favorite toy?
“Um, dinosaurs.”
“What’s your favorite dinosaur?”
“I like T-rex.”
“What do we do over here?”
“Play with dinosaurs.”
“We practice writing. Let’s practice writing a J. What name starts with J?”
“Um, T-rex!”
You get the idea.
After the two practice writing a J for Jeremiah, they turn the paper over and start work on – what else – drawing a dinosaur.
“I need help,” Jeremiah says, so Bercovitz shows off her dinosaur-drawing skills, and together the two add spikes to the T-rex’ back.
Next it’s back to the dressing tree, where Jeremiah hangs up his prosthetic arms before having one last chance to play. He chooses cars and delights in sending them flying down a makeshift ramp with a push from the residual arms left in place after his amputation.
“I love this,” he shouts as one car flips upside down. “Whoa!”
When it’s time to go, he pulls on his jacket with help and says to Bercovitz, “See you later, alligator.”
The two have a sweet bond, forged over the two years that she’s been working with him.
“He’s making such good progress, especially in the last six months to a year,” Bercovitz said, attributing that in large part to her little patient and his family.
“I show them things here, and they practice at home, and that’s what makes the difference,” she said.
“A lot of brains coming together is what has made him independent and successful,” she added, giving a shout out again to the 3D printing lab, as well as physical therapy, speech therapy, occupational therapy, Hanger (the company that provides his prosthetics), his team of doctors and his family.
“Just everybody working together.”
Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org