When Theodore and his family moved to Virginia, his parents didn’t know where to start. Theodore requires coordinated medical care from multiple specialists and while they had great providers in North Carolina, they couldn’t continue making the drive. Then, they found CHoR.
“We needed lots of programs and specialists. We didn’t need mediocre. We needed wonderful,” said his mom, Brachla. “We were in early intervention and they directed us to CHoR. We made an appointment and it was all over from there. We immediately switched everything over to CHoR.”
Theodore is loving, kind, affectionate and loves connecting with people. He also has chromosome deletion 7p22.1. He’s missing 54 genes, which affects a lot of his body. As a result, he sees providers in GI, orthopaedics, neurology, ENT, physiatry, urology, audiology, feeding, and physical, occupational and speech therapy. His family first started coming to CHoR shortly after he was diagnosed at about 6 months old.
With so many overlapping needs, it was important that Theodore had just the right team.
“One thing that was so wonderful at CHoR is that if one specialist felt like they needed someone else’s opinion, they never hesitated to reach out to them. For example, ENT was trying to determine why Theodore needed so many sets of tubes, so they worked with immunology, then ordered a sleep study. Everyone worked together in a coordinated way,” said Brachla. “It was the same thing with the therapists. They would recommend another therapist if there was a more appropriate person to meet Theodore’s needs. They just knew if there was a better fit for Theodore and that was really special.”
One member of Theodore’s “just right” team was his occupational therapist, Sarah Phillips, who not only provided great care herself, but was constantly in connection with his other CHoR specialists too.
“Sarah adored Theodore and gave him loving care with important boundaries. She could read him and knew when he needed to be pushed and when he needed more gentle care. She was our ground zero. She became like family,” added Brachla.
No matter what they were working on, Sarah always tried to make their time together fun and engaging.
“We spent time on swings and scooters helping regulate Theodore after a busy morning at school. We incorporated lots of drawing, cutting, tongs and puzzles targeting his visual motor and play skills. We also worked on helping him be more independent with dressing, which involved some creative positioning of toys/objects to simulate the movements and grasp patterns for getting clothing on and off,” said Sarah.
Sarah was also instrumental in connecting Theodore with our feeding program, which his mom describes as “one of the best in the nation.”
“I worked with him to develop his chewing skills and independent drinking from a straw cup. Theodore progressed to eating a lot of the foods his brothers eat,” said Alli Davis, his occupational therapist in the feeding program.
Alli co-treated with social worker Chris Gardner, who provided behavioral support and worked with Theodore on reinforcement strategies to help him with the hard work of learning how to chew.
“Theodore was a delight,” said Chris. “When he had success, he would gleefully yell, ‘I did it!’”
While Theodore certainly put in a lot of effort, he wasn’t alone.
“As stressful as it was driving to clinic multiple times a week, Theodore’s mom always did it with a smile on her face. She worked so hard and always did the homework we asked her to do with Theodore,” Chris added. “He probably wouldn’t have done as well without her hard work and dedication.”
Brachla is grateful for the team’s dedication right back.
“Ms. Alli and Ms. Chris in feeding changed his life. The fact that he can eat foods and not have to be dependent on a feeding tube is huge,” said Brachla.
Among his favorite foods are crackers, crunchy Chips Ahoy cookies and pasta. He has plenty of favorite things beyond food too—his brothers, playgrounds, the beach and his grandparents’ house in Indiana. He’s always had a connection with animals as well, especially his own dog, Penelope.
Theodore’s dad was recently stationed at a new base in California, which meant his family had to move across the country.
“We’re in the process of trying to find all new providers. It’s tough to go from something so substantial at CHoR and having to start over,” said Brachla.
Thankfully, Theodore has already settled into his new school with one of his brothers and a great foundation of skills he developed with the help of his CHoR team.
“Theodore made strong progress across disciplines during his time at CHoR, especially because of his dedicated family who saw the value in our services, carried over home programming recommendations, and advocated for his needs,” added Sarah. “One example of progress I will always remember is the day he learned how to coordinate his muscles to blow bubbles for the first time. There were happy tears all around watching him joyfully enjoy a classic childhood play experience!”
There are sure to be many happy memories made in his new home too!
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