From the earliest weeks of Milo's life, our family embarked on a journey marked by both challenges and determination. Despite a normal pregnancy, full-term birth, and unremarkable newborn screens, we began to notice subtle differences. When Milo was just a few weeks old, we noticed his right upper eyelid droop, but at the time we thought this might be a familial trait, as his father also had a slight ptosis. However, as the weeks passed, we began to note more subtle deviations from the typical development of our first child.
Around four weeks of age, Milo began experiencing choking episodes during feeds, prompting us to seek help. A visit to an ENT specialist resulted in the correction of a tongue-tie, which initially improved his feeding and put us at a temporary ease. However, Milo soon developed Torticollis, a condition where the neck muscles tighten and we promptly began physical therapy at four months of age because his gross motor milestones were noticeably delayed. Our concerns were once again at the forefront when Milo’s pediatrician noticed hypotonia, or decreased muscle tone, at his six-month wellness checkup, We requested a referral to a neurologist in January 2020.