Benign Myoclonus Of Infancy

The weekend began like any other Friday but quickly spiraled into one of the most emotionally challenging experiences of our lives. What started as an unusual head-dropping motion in our six-month-old daughter Paisley turned into a terrifying 72-hour ordeal that tested our faith, resilience, and priorities in ways we never imagined possible.

It all began when we noticed Paisley repeatedly dropping her head while playing in her bouncer. Initially, we attributed it to fatigue – our little one is notorious for fighting sleep due to her fear of missing out on anything exciting. However, when the episodes continued and became more frequent, alarm bells started ringing. This wasn't normal tiredness; this was something different.

The medical journey that followed was a roller coaster of conflicting opinions. Our pediatrician's office reviewed video footage of the episodes and reassured us it was simply a developmental issue – a six-month-old's muscles still developing and struggling to hold up a heavy head when tired. This explanation aligned with our initial instincts, providing temporary relief. However, everything changed when neurologists who viewed the same footage expressed serious concern, using words like "infantile spasms" and "epilepsy" – terms no parent ever wants to hear associated with their child.

The stark contrast between these medical opinions thrust us into an impossible situation. Should we trust the pediatricians who said everything was fine, or the neurologists who were concerned enough to call us on a Saturday morning, insisting we get to the children's hospital immediately? The urgency in their voices made our decision clear – we needed to take this seriously.

Walking into Barbara Bush Children's Hospital, Maine's only children's hospital, was surreal. Those hospital rooms with their specialized cribs are places you see in heartbreaking news stories about sick children – never places you imagine your own child will be. The weight of seeing our happy, typically healthy baby in that environment was crushing, especially knowing there were families nearby facing far worse situations, some even saying goodbye to their children.

The 24-hour EEG test that followed was both physically and emotionally draining. Watching technicians glue electrodes to our baby's head while she screamed and looked at us with betrayal in her eyes – silently asking why we weren't stopping this – broke us in ways we weren't prepared for. The guilt was overwhelming, even knowing it was necessary. All we could do was hold her and repeatedly whisper "I'm sorry" and "I love you."

Throughout this ordeal, Paisley demonstrated remarkable resilience. Despite the wires, despite the unfamiliar environment, she continued to smile, wave, and charm every nurse and doctor who entered her room. While we were emotionally drained, unable to eat, sleep, or even maintain basic conversations, she adapted with the resilience only a child can show. So much so that hospital staff would stop by just to see "the cute baby" who was brightening their otherwise difficult days.

After approximately 10 hours of monitoring (despite being prepared for a full 24-48 hours), we received the call that changed everything. The neurologist had reviewed the EEG data and determined Paisley was experiencing benign myoclonus of infancy – not the feared infantile spasms that could lead to epilepsy and developmental issues. She would outgrow this condition with time. The relief we felt was indescribable – pure emotion that's impossible to put into words.

This experience fundamentally changed our perspective on what truly matters. All the financial worries, work stresses, and petty frustrations that had consumed us before suddenly seemed trivial. In those hospital rooms, staring at our daughter connected to machines, we would have given up absolutely everything just to hear that she would be okay. Nothing else mattered.

This 72-hour journey taught us the power of faith, the importance of trusting your instincts as parents, and the true meaning of priorities. It reminded us to be grateful for health – something we often take for granted until it's threatened. Most importantly, it showed us that when faced with life's most difficult challenges, sometimes all you can do is lean on your core people, focus entirely on what truly matters, and trust that somehow, you'll find your way through.