Life with Levi
Levi Rines may have been born with a defective heart, but when it comes to expressing love, there’s no heart deficiency at all.
He loves his family, friends and therapists—and vacuum cleaners, too.
Born full-term at Spectrum Health Butterworth Hospital on March 24, 2012, Levi weighed in similar to the other babies: 7 pounds, 9 ounces, 21 inches long.
“He was like your typical normal baby should be, except he wasn’t,” said Levi’s mom, Lindsay. “But we didn’t know that. His fingers and toes were blue.”
Levi landed in the Helen DeVos Children’s Hospital Neonatal Intensive Care Unit.
Kim Lee, MD, a pediatric cardiologist with Helen DeVos Children’s Hospital Congenital Heart Center, ordered an echocardiogram and diagnosed a severe heart defect: hypoplastic left heart syndrome.
“We were shocked,” Lindsay said. “The whole time I was pregnant, there was no indication anything was wrong. Basically, the left side of his heart did not grow enough to be able to sustain him.”
Levi underwent heart surgery just four days after birth. He’ll need additional surgery as he grows.
“This is the most stable that he has been,” Lindsay said. “When he had his trach and ventilator, we had nurses in the home.”
After three years, Levi graduated from home physical, occupational and speech therapy with the Spectrum Health At Home Visiting Nurses Association
“He wouldn’t be where he is today without them,” Lindsay said.
Levi transitioned to Helen DeVos Children’s Hospital pediatric outpatient rehab after he got his trach out last March.
The continuum of care in speech and occupational therapy has led to more great strides for little Levi.
On a recent Friday afternoon, Spectrum Health pediatric occupational therapist Megan Kloska encouraged Levi to crawl through a fabric tunnel, pick up a bean bag bunny and throw it through a plastic basketball hoop.
“His finger dexterity and finger grasp is very weak,” Lindsay said. “Megan does a lot of fine motor skills with him, grasping and pinching.”
Kloska said the crawling helps strengthen Levi’s shoulders and core muscles.
As they talked, Levi picked a green bean-bag monkey and tossed him in the tunnel. He crawled in and then pretended to nap.
Life with Levi is like this. He’s part preschooler, part punch-line.
“This kid makes us laugh and laugh and laugh,” Lindsay said. “He is such a joy to have around. His facial expressions and the things he does, he’s just hysterical.”
After his “nap,” Levi tossed a dinosaur through a basketball hoop.
Lindsay and Kloska exploded into applause.
To achieve moments like these, Lindsay became a part of the Spectrum Health Continuing Care Patient and Family Advisory Council, one of the 18 councils that partner with Spectrum Health leaders to improve care. She wanted to shape the care her son and other children receive.
“I believe we are making a difference,” she said. “I am delighted to use my voice in this way. I see results, and that keeps me coming back.”
After the tunnel, Levi and Kloska rolled a ball to each other, followed by bounce exercises on a 4-foot-in-diameter red, rubber ball as Kloska sang, “I’m a Little Teapot.”
“This is good for postural control,” Kloska explained.
After that came more gripping exercises. Kloska grabbed some colorful devices with suction cups on the ends—they looked a bit like rubber darts—and placed them on a mirror. Then she instructed Levi to grab the “Squigz” one by one and pull them off.
Breaking the suction helps build his strength.
Later Levi placed colorful wooden pegs in holes in plexiglass. He finished by high-fiving his therapist.
Kloska, who has worked with Levi since July, said he’s becoming a therapy warrior.
“He’s doing really well,” she said. “He used to not tolerate sessions for long. His tolerance has gotten much, much better. We’re getting him up on his hands and knees and working on grasp patterns.”
And Levi has grown to love and trust Kloska. Sometimes he’ll tell his mom to wait in the waiting room.
“It took a while to build up a rapport,” Kloska said. “Now, he’ll tell his mom, ‘You can stay in the waiting room—I’m going back with Megan.'”
Levi is in it for the long-term, Kloska said.
“I think it’s going to be a lot of therapy over the years,” she said. “There’s a wide variety of fine motor skills and strength deficits we’re still working on.”
As Kloska spoke, Levi approached his mom and kissed her on the cheek.