"I had complications during and after delivery and was confused during the immediate postpartum period," explains Melissa. "We were under the impression he would just be in the neonatal intensive care unit (NICU) for a few days, and then we’d go home, but he stayed for five weeks because there were ongoing concerns about his oxygen levels. He was going on and off supplemental oxygen, and they couldn’t figure out what was going on with his lungs. I realized something was abnormal even for a premature baby when he kept failing his car seat test and couldn’t go home."
Courtesy of Melissa Loretto
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The Early Days
"In the early days, we were getting all these tests done, but getting a lot of normal results. We were told, 'he’s just floppy,'" she recalls. "We were combing the internet to try to figure out what it might be, thinking it’s something that hasn’t been discovered yet."
"I can barely remember anything from that time. It’s a blur. I have blocked it out. It was so awful. We were going from specialist to specialist," Melissa admits.
Regardless, Lauren was intent on looking at the whole picture to come to a conclusion.
Courtesy of Melissa Loretto
Melissa said Lauren conducted many different tests on Troy since the day of his early intervention evaluation, including the Test of Infant Motor Performance, the General Movements Assessment, and the Hammersmith Infant Neurological Examination.
Courtesy of Melissa Loretto
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The Diagnosis That Changed Everything
"It’s never too early to seek support, and early intervention can help reduce or even prevent developmental delays," says Lauren. "At the same time, it's important for parents to remember every child develops at their own pace, and a delay does not necessarily indicate a serious problem."
Courtesy of Melissa Loretto
Infant Mobility Signs
Decreased movement on one side of the body compared to the otherExcessive stiffness or floppinessIssues with swallowing and suckingFrequent arching of the backLimited variety of movementReduced interest in exploring movementStrong preference for using one side of the bodyCrawling with a “bunny hopping” pattern (difficulty with alternating leg movements)Major delays in milestones, such as sitting up and crawling (for example, sitting independently at 10 months instead of the typical 6 months)
MCOPS also presents issues with muscle tone, severe eye abnormalities, constipation, and potential cognitive impacts. Troy, who is now four years old, doesn't present with all of these issues himself. While he has one eye with a cataract and poor vision, along with issues with motor skills, cognitively, he is in a great place.
Courtesy of Melissa Loretto
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What Life Will Be Like for Troy
"There’s not another kid with MCOPS who has his exact mutation, so it’s hard to predict what the future holds," says Melissa.
"Troy is a very happy kid who can get around easily using his walker," shares Melissa. "He climbs up and down stairs without any help. He talks all day long. He loves his dogs, Astro and Mulan, and loves cars. He wants to be a 'doctor nurse' when he grows up, taking care of animals or people. He attends preschool and will start kindergarten in the fall in a general education classroom with other kids in our neighborhood. Now that he’s talking, he has formed some adorable friendships."
Courtesy of Melissa Loretto
"Use your community," advises Melissa to parents who may find themselves in a similar situation. "Don’t be afraid to speak up if you feel something is wrong, and follow that intuition. Meet other people—virtually or in person—who are going through something similar. And don’t be afraid to get out there in the real world with your child, even if they look or move differently. I was very involved with Fit for Mom and met a lot of other moms whose children were undergoing medical challenges, and that was such a comfort to me."
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