Troy

Parents: Melissa and Paul
Year of Birth: 2021
Hometown & Country: Oak Park, Illinois, USA

A Message from Troy’s Parents:

Troy was born between 4-5 weeks early in March of 2021. Immediately after birth Troy was admitted to the NICU because he wasn’t breathing as expected. Troy spent 5 weeks in the NICU with general concerns over oxygen saturation and temperature regulation. While in the NICU, Troy underwent several tests, but all tests came back normal despite the fact he was unable to pass his car seat test after multiple attempts. Troy was finally sent home in April and we were instructed to use a car bed instead of a car seat. Knowing our son still had oxygen saturation issues after leaving the NICU was incredibly challenging for us. Despite all of the normal test results, we knew there was more to explore. Troy’s muscle tone alternated between high and low, he wasn’t meeting traditional motor milestones, and his right eye began to drift inward. We jumped into action and began to advocate for additional testing and evaluations. Troy began physical therapy through the Early Intervention program at 2 months old, occupational therapy at 6 months old, and feeding/speech therapy at 9 months old. Around the same time Troy started occupational therapy, he received a vision test. We then learned his right eye had a cataract, a -14.5 prescription, and was slightly microphthalmic.

In early 2022 we received Troy’s genetic testing results back and learned he had a spontaneous mutation of his RARB gene. Hearing that our son would be up against a complex neurological disorder led to mixed feelings. We were relieved to have a diagnosis, but scared about the obstacles Troy would have to face in the coming years. That said, we figured what was to come couldn’t be more difficult than the past year, and dedicated ourselves to helping Troy get the support he needed. Paul, was able to find a new job working from home that allowed him to oversee many of Troy’s therapies and daily activities and his Mom continued to advocate for more services. Troy now has added developmental therapy to the mix and will be starting vision therapy as soon as a local therapist is available. After nearly a year of eye patching, Troy received strabismus surgery in hopes that he’ll be able to receive additional visual input from his right eye. We both work with Troy daily on his therapies, and the hard work is beginning to pay off! 

Troy’s favorite things to do include: roughhousing with his dad, cuddling/singing with his mom, and playing with his two husky mix “woof woofs”, Mackenzie and Astro. He loves all things cars, stroller rides, and floating (with support!) in the bath. He seems to have a true love for the water, after spending a lot of time with some bath-based physical therapy tools as a baby, and we are hoping to nurture this love further at the local pool after Troy’s motor skills improve just a bit more. We are hopeful that with the right mix of familial and medical support Troy will learn to manage MCOPS12 and enjoy all that Chicago has to offer.  

What are our Dreams for Troy?

Right now our primary hope is that Troy will be mobile without the use of a gait trainer, walker, or wheelchair. Troy can stand if he holds on to a surface, but he isn’t able to roll over or crawl and he tends to lock up his limbs when standing. Troy is so eager to explore, but his limited mobility prevents him from doing the things other toddlers love to do. So our hope is that in the future mobility will be less of a concern. 

 

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