A 7-year-old who has been attending The Warren Center since he was a small child is continuing to impress his family and his therapists with his ongoing development. Recently, Conner started walking across the room as his therapist held onto his shoulders, which brought tears to his mom’s eyes.
Conner’s early life
Conner was born with the umbilical cord wrapped around his neck, not making any sounds. The nurses worked to get him breathing and then rushed him to the newborn intensive care unit (NICU). It was more than 30 hours later when Conner’s mom Angela was able to hold him for the first time.
He spent those first 16 days of his life in the NICU where he struggled with feeding and growing, and as a result, he received his first feeding tube. Despite being born full-term, the hospital staff said that Conner was, “acting like a preemie baby.” Even after he was discharged from the NICU, the hospital stays did not end there.
Conner was admitted to the Children’s Medical Center only a few days after he came home from the NICU due to weight loss and not waking up for feedings. After more than a week of doing tests and evaluations that came back clear, he was released from the hospital with the idea that he needed to keep food in, get stronger and outgrow the challenges he faced with feeding.
However, Conner continued to struggle with feeding and went through several feeding tubes over the next year with short breaks in between to see if he could eat enough on his own. Angela felt that Conner was not meeting his developmental milestones and consulted with specialists including a developmental pediatrician and a geneticist to try to find answers. The specialists did additional tests and evaluations on Conner that either came back clear or provided little help in finding a diagnosis.
When he was one, Conner became ill and spent two weeks at Children’s Medical Center. The medical staff was shocked to see that he was not progressing and ordered more tests that came back normal or abnormal but inconclusive. With still no answers, Angela researched top children’s hospitals and contacted Boston Children’s Hospital after she found, on their website, that they had a support group for children and their families who were facing complicated issues. Conner then spent a week at Boston Children’s Hospital, seeing seven different specialists and enduring further testing and procedures. While the specialists there did rule out some possible diagnoses, they were not able to find answers for Conner and his family.
Conner’s journey in early childhood intervention
Conner initially received in-home therapy services through the Early Childhood Intervention (ECI) program. In the beginning, he had no motor skills. He was not able to sit, hold his head up or grasp items.
With the help of therapists at The Warren Center and the education and coaching that Conner’s family received, when he was two, he was able to sit. He was fitted for glasses that allowed him to see more of his surroundings and touch items after his therapists recommended a vision evaluation.
Both Conner and his family developed a close relationship with his therapists. He transitioned to Clinic Therapy Services after he graduated from the ECI program at 3 years old.
“Early Childhood Intervention was amazing just because the therapists were there. They were with us. So then that made the transition to Clinic Therapy Services so much easier and is one of the big components of why we came here rather than going somewhere else,” Angela said.
Conner’s progress with physical therapy
When Conner was 4 years old, he could not walk yet. Now, at 7.5 years old, Conner has gone from not wanting to stand at all to standing by himself for five to 10 seconds. He also can stand with support for up to an hour. A year ago, Conner was not willing to even take one step with support, but now, he has started walking with moderate support from his therapist. In December, his physical therapist captured a video of him walking across the room while she held onto his shoulders. The therapist show the video to Conner’s mom, Angela, which caused Angela to cry tears of joy. You can watch that video in the social media player below.
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Conner will be receiving a gait trainer this summer so he can start walking more on his own.
“It’s exciting as a therapist to see our kids work hard and make progress,” his physical therapist, Allison Johnson, said. “Conner has earned every bit of his independence and I am so proud of him.
Conner’s progress with occupational therapy
When Conner first started to receive occupational therapy, he had a lot of difficulty with basic motor milestones, like rolling, crawling, standing, and walking, but is now completing all of these milestones with only a little bit of help. Conner also had difficulties with grasping items, such as toys or a fork and spoon to feed himself. He now has a wider range of toys he likes to play with and is doing much better at using a spoon and a fork. Watch Conner practicing using a fork in the social media player below.
Occupational therapy has helped Conner a lot with sensory integration, which is an important skill for grasping items, mobility, feeding, and regulation.
“When he first started, he did not like to explore textures with his hands,” said his occupational therapist, Anna Ballard. “He now enjoys playing with sand, playdoh, water, and many other textures! He is very motivated to move!”
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Conner’s progress with speech therapy
At 4 years old, Conner continued to feed with a feeding tube. Now, at 7.5 years old, Conner is able to tolerate and accept most softer and easily managed foods. His speech-language pathologist says Conner can feed himself using a spook and a fork, although like most kids, he prefers eating with his hands. Conner spontaneously vocalizes often and will sometimes approximate words like “hi” and “yeah.” He will imitate sounds like blowing raspberries and lip smacks. He can use buttons with pre-recorded words/phrases like “more” and “all done” and can use them to make choices.
“Over the last three and a half years, Conner’s progress with speech and language is slow but steady,” his speech-language pathologist, Timothy Villa, said. “We are continuing to explore various high- and low-tech speech devices and he surprises constantly with what he can do now.”
