The first question after his birth was, "Would he survive?"
Anthony is a rambunctious 4 year old boy – and his mother, Nikita, sounds proud to be able to describe him that way. “The first question after his birth was, ‘Would he survive?’” she says. “The second was, ‘What will his quality of life be like?’ Doctors didn’t know and couldn’t predict.”
Anthony was born prematurely at 27 weeks old and weighed just 1 lb 9 oz. He’d suffered a brain hemorrhage (a grade 4 on a scale of 1-4) and although doctors knew he’d be delayed as a result, they could not say to what extent. They did know he had cerebral palsy affecting his left side.
The uncertainty grew for Nikita and her family. “Not knowing [what is happening or what to expect] is the hardest thing,” she says. She began comparing his progress to that of other children, which left her more worried and anxious. “By his first birthday, Anthony was still not walking and doctors were saying he may never walk. I wasn’t sure what to believe he could do.”
One day, Nikita reached a turning point. She started thinking in other ways. “Now I ask myself, ‘What’s the best that HE can do?’” As a result, she is experiencing the excitement of seeing small miracles happen all the time. “We don’t take ANYTHING for granted because when we left the hospital with him, we didn’t know what was possible.”
When Anthony started receiving occupational therapy at Children’s Therapy Center, his therapist, Lindsay, helped Nikita and her family set goals for Anthony. “At first, I didn’t even know where to start,” Nikita says. “Then out of the blue, I just started signing with him and he surprised me by picking that up quickly! That’s when I started raising my sights.”
One of Anthony’s goals became using his left hand, which, as a result of his cerebral palsy, was often at his side and curled into a fist. “Prior to therapy, Anthony was not using his left hand at all,” Nikita says, watching as her son delivers a perfectly executed left-handed high-five to his therapist. He continues to practice by carrying a box of blocks with both hands across the room – that is, until he gets a four-year old’s twinkle in his eye and allows the box to come crashing down. He giggles.
“Oh, no!” Lindsay says. “Now you have to pick up all the blocks!”
“You’re killing me, Lindsay!” Anthony says, delighted to have an opportunity to use his favorite new phrase. He begins picking up the blocks as requested and dropping them one by one back into the box. Since practicing grasping and releasing is another skill Anthony is working on, the scattered blocks have served another purpose.
Nikita’s family helps Anthony work on using his left hand more frequently at home, too. “It’s a daily expectation, not just one that happens weekly at therapy. Most kids learn how to drink from a cup starting with two hands and moving to one. We had to start Anthony the other way around and encourage him to use both hands!” Working with Lindsay has helped Nikita understand how reinforce at home what he learns in therapy.
“Luckily, Anthony loves learning,” says Nikita. “He just started pre-school and picks things up quickly, including Spanish and Japanese. He can count to 100 and loves to read! He has an entire collection of books. He loves puzzles, the iPad, and all things Elmo.”
Nikita reflects on her son’s progress. “Some milestones are tangible,” she says, using his left hand as an example. “There is a huge difference between this –“ Nikita opens her hand wide, “ – and this,” she says, closing her hand into a tight fist. “But his attitude has also changed over time. At first he was resistant but now he’s enjoying therapy. He knows he can do it!”