Jay’Shawn celebrated his 8th birthday in style earlier this month. He didn’t have cake, but he loved the ice cream – a big treat, and huge accomplishment, for someone who has only been eating for a matter of months.
Jay’Shawn was born with cerebral palsy and has been coming to CHoR his whole life. His therapists get the pleasure of seeing him most frequently – on a weekly basis – and he comes to the feeding program every other week (although his social worker, Marisa, says he’s about to get “kicked out” of the feeding program because he’s doing so well).
“He’s a miracle. The things we were told he wasn’t going to do, he’s doing. Jay’Shawn is remarkable,” said Connie, Jay’Shawn’s full-time nurse.
Connie has been working with Jay’Shawn since we was 1 and brings him to most of his appointments. She’s been collaborating closely with the team in the feeding program to help identify some of Jay’Shawn’s favorite foods. Yogurt is at the top of the list – only strawberry – along with vanilla pudding and oatmeal. When needed, they’ll puree foods (like a peanut butter and jelly sandwich or ravioli) to the proper consistency and then Connie freezes them at home in individual servings. He likes most things, but Connie and his team know…do NOT try to give him tuna or orange juice.
Another recent milestone has been communicating. Jay’Shawn isn’t able to talk, so his speech therapist, Nell, at our Petersburg Therapy Center has been working with him using assistive technology.
“When I first met Jay’Shawn, he wasn’t very responsive or making many attempts at communication. We started by trialing speech output devices that produce a pre-recorded word when you push a button,” said Nell. “We paired these devices with some of Jay’Shawn’s favorite activities. He likes silly, physical activities like swinging and playing chase. We settled on a multilevel speech playback device and he has made so much progress. He’s gone from using a button with a single, one-word message to now pushing up to three buttons at a time to make a three-word sentence.”
Nell’s goal is that Jay’Shawn’s language and communication abilities will continue to grow so he can advocate for himself and share his thoughts and feelings. For now, he’s gotten really good at telling Connie and Auntie – his Aunt Angie and legal guardian – what he wants to do. This usually includes playing trucks or action figures with his twin brother, or being outside.
“We’ll go to the park. He loves swinging and feeling the air in his face, but we haven’t been doing much of that during COVID,” added Connie.
Because of COVID, Jay’Shawn hasn’t been able to ride the bus and go to school like he normally would either, but he continues learning from home. Auntie helps him stay on top of his first-grade curriculum after work in the evenings.
Thankfully, Jay’Shawn got to take advantage of an extra-special surprise last October, before COVID, that his social worker, Marisa, had been planning for a while.
“Jay'Shawn has made leaps and bounds since I first met him. Without the love, attention and advocacy that Connie and Auntie have given to him, he would not be where he is today,” said Marisa. “I wanted Jay'Shawn and his family to be able to go on a trip of a lifetime – a chance to step out of their small, rural town for a bit. I submitted them to Make-a-Wish and their wish was granted! When I found out, I actually cried.”
They chose to go to Disney World and the trip was everything they imagined.
“Disney was unbelievable. Jay’Shawn was just excited about everything. When he met Mickey, he couldn’t take his eyes off him. I try to get Jay’Shawn everything he deserves and Marisa helps me do that,” added Connie.
Marisa and Nell are just part of the big team in Jay’Shawn’s corner at CHoR. He sees Dr. Kum-Nji for his primary care, Dr. Monasterio for physical medicine and rehabilitation, Dr. Schmidt in pulmonology to help with his asthma, Dr. Williams for dental care, Heather Agnew for GI, Nancy Thompson to check on his g-tube, Dr. Petersson and Lauren Riggs in ENT as well as Meredith Heiner in audiology to stay on top of his ear tubes and hearing aids, Rachel Livingston in neurology for his seizures and our cardiology team for his heart murmur. He also works with Sarah Phillips for occupational therapy, Heidi Leeser for physical therapy and, of course, the feeding team!
“I love being a small part of his journey and being able to help and advocate to ensure he has access to resources and support,” said Marisa.
Connie’s hope is that one day Jay’Shawn will walk on his own, but one thing everyone agrees on is that they want him to continue making amazing progress and living a life full of love and happiness.
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