By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
Six years ago, Carlena Moses sat in a hospital room, day after day, night after night, wondering what the future held for her tiny daughter, Kennedy.
The little girl was born at just 24 weeks, weighing 1 pound, 4 ounces. She breathed with the support of a ventilator, she had a shunt placed in her head to relieve fluid on her brain, and she received nourishment from a tube in her tiny belly.
In those early days, when Kennedy was so fragile in the NICU at Riley Hospital for Children at IU Health, Moses leaned on her family, her faith and the team at Riley to carry her through the hard days.
“And honestly, I really drew a lot of strength from her,” Moses said about her daughter. “She’s remarkable. Week by week, the things she accomplished really gave me so much strength because this tiny little baby was making breakthroughs on her own, with great support. I was just thinking I’m going to be grateful for any time I have with her.”
Six years later, Kennedy is flourishing. The 6-year-old just wrapped up a year of kindergarten, where she excelled. The feeding tube she had is gone, replaced by her appetite for pizza, blueberries and celery.
Even the cerebral palsy she was diagnosed with at 3 doesn’t slow her down. She walks with a slight limp in her right leg, but she can run circles around most adults.
FULL OF IDEAS
We followed Kennedy through an occupational therapy appointment at the Riley Outpatient Center last week – her first in-person visit with OT Havilah Champoux in more than two months, ever since the coronavirus changed everything.
For several weeks, the two worked virtually, with Kennedy following Champoux’ directions via computer, the same way the little girl was connecting with her teacher and classmates.
“The first time we did virtual she was just so excited and over the moon because she had gotten used to seeing her teacher and other students on the computer,” Moses said. “This was her first time seeing Havilah on the computer and she could barely focus. Her skin was the only thing keeping her together.”
The two did yoga, incorporating poses that corresponded to the letters in Kennedy’s name, her mom said.
“One of the things I appreciate about the therapists at Riley is the things they do with Kennedy are unique to her.”
Now that the two are back together, Kennedy is positively giddy. And the girl has ideas!
That’s one of her favorite phrases, Champoux says, especially when she’s trying to get out of doing something she’d rather not. “I have an idea …”
The therapist, who has worked with Kennedy for about a year, has certain activities she wants Kennedy to do to strengthen her core muscles and train her brain to tell the right leg and the left leg when and how to move.
Wearing a big pink bow in her hair, high-top sneakers and a Mickey Mouse face mask, Kennedy is eager to get to work building an obstacle course with help from Champoux and Kennedy’s stuffed giraffe, Jeffrey, who comes with her to all of her therapy appointments. In fact, he pretty much goes with her everywhere. She has three replacement giraffes at home, but they are not the “right Jeffrey,” her aunt says.
Together, they push and pull a heavy mat across the room, then roll a large tunnel into place, and finally – at Kennedy’s suggestion – bring over a plastic slide to put in the middle. Her job is to scoot through the tunnel, with Jeffrey of course, climb up the three steps of the slide, go down the slide, then crawl up the elevated mat to reach one of the animal cards at the top.
Three times she does that, and each time she has “an idea” about how to change things up, at one point suggesting the floor is hot lava. Champoux is patient and encouraging but steady in her focus, never letting her active patient stray too far from the planned activity.
“She’s so sweet, and she’s a hard worker,” Champoux said when Kennedy was out of earshot. “She loves to play, so if we’re doing something fun, she’ll do her best.”
CONFIDENT AND CARE-FREE
That’s her little girl, says Carlena Moses, who works as an early childhood coordinator. The joy her daughter brings her is evident in her voice.
“Kennedy is resilient, self-confident and care-free. She’s not afraid to be herself. I love that about her, and I hope that’s something she never loses.”
The 4½ months that Kennedy spent in the NICU at Riley were challenging, Moses said, “but it was the best thing for her and also for me because the NICU is where I learned to care for her.”
Even when she was discharged, the two returned to Riley often, visiting therapists and specialists.
“As exhausting as that was, it was necessary for her care and I found comfort in it because I was being reassured that I was doing the right things at home,” Moses said. “And I was instructed on what to do next and how the next couple months needed to look for her.”
Pediatric neurologist Dr. Kristyn Tekulve is among several physicians on Kennedy’s care team, and she has been delighted to see the progress her young patient has made.
“Although Kennedy has developed some neurologic complications common in prematurity, including seizures and muscle stiffness/weakness (cerebral palsy), she and her mom have both worked incredibly hard with therapies and schooling,” Dr. Tekulve said. The result is “a completely wonderful and developmentally age-appropriate little girl.”
“I am so lucky to be able to help in her care,” the neurologist said.
Champoux feels the same. As the two shift their focus to fine motor skills, Kennedy’s imagination kicks into high gear again while adding “toppings” to a pretend pizza the two are making out of Play-Doh.
She decides a broccoli pizza would be just the thing and calls out to Jeffrey, the stuffed giraffe to come in for lunch.
“Jeffrey is misbehaving,” she says. “He’s rolling down hills and jumping in muddy puddles.”
Even as her imagination is at work, so are her hands and her brain, as the repetitive nature of cutting with scissors and snapping buttons on toys strengthens not only her weaker right side but also the connections in her brain that promote bilateral coordination.
Champoux calls her “an old soul” and says she is a joy to work with in their weekly sessions.
That relationship means the world to Moses. As does the one Kennedy shares with physical therapist Capi Seeger, who Moses says has been “the biggest beam of support year after year.”
“I’m always just very, very grateful to everyone at Riley because they are our extended family,” Moses said. “When it comes to raising a child, it takes a village. I really do believe that, and Riley is such a huge part of our village.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com