JT and his family moved to the Lone Star State and started therapy services with Therapy 2000 after the pandemic. His therapy team quickly learned that JT was a very unique little boy for many reasons, including being one of nine people in the world with his diagnosis of TPI (triosephosphate isomerase deficiency), which prevents his body from processing sugars. Due to his diagnosis, JT was completely dependent on his caregivers for all activities in his daily routine and mobility/positioning. He also presented with sensory aversions (gagging if touched with new textures), difficulty maintaining visual focus, limited communication (non-verbal), an inability to eat/drink by mouth, and diminished purposeful movement (lifting head, reaching/grasping).
After his evaluation, JT’s OT created an individualized treatment plan to address sensory concerns, coordination and range of motion of his upper body, postural control, strength, and endurance to help this unique, little boy explore his environment, play, and learn! His OT and ST worked together to support JT’s ability to communicate and develop feeding skills. It was a true team effort to help JT develop the fine motor skills needed to use his AAC device and manipulate utensils as well as the postural control needed to maintain alignment in his wheelchair for improved positioning while practicing eating, using his AAC device, and participating in play routines. The most important aspect of JT’s success has been consistent care coordination between his therapy team to assure a comprehensive treatment approach as well as participation of his parents and private-duty nursing staff in therapy sessions and with carryover of his HEP throughout their daily routine. Despite being hospitalized several times, his dedicated caregivers and therapists helped him to persevere and achieve his goals.
After lots of hard work, JT’s quality of life has improved as he is able to participate in all kinds of new experiences with his family. He has been enjoying the pool, which is something he wouldn’t have previously been able to enjoy because of his sensory aversions, and now he can play with toys with varying textures, playdough, slime, and water beads. He is also more independent in his daily activities; for example, he is able to move his toothbrush in his mouth instead of just biting on it, and he is able to push his arms through his shirt and pull them out when dressing. JT is now able to lift his head when in bed, so he can clear his face for safety without relying on a caregiver. He can also propel his power wheelchair with guidance, so everyone better watch out – JT is on the move! His OT sessions heavily focused on improving purposeful movement of JT’s arms/hands, and as a result, he is now able to feed himself with a spoon (with occasional assistance), drink from a nectar bear cup, and press buttons to communicate with his AAC device! He loves to play with dinosaurs and trucks and read books, which he is now able to reach for and turn pages without help. It’s a whole new world for JT!