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As with any new parents the first few weeks after Grace was born were a tough adjustment period but we were happy. Grace was a crier and we went through the sleeplessness and constant laundry that everyone experiences. Grace was amazing, Alysia and I would just stare at her for hours. We loved to sit by the edge of the crib and stare at our perfect little miracle. Alysia took a million pictures and we adapted to life as new parents.

Grace amazed me because she was constantly changing. Everyday brought something new and I was a little shocked at how quickly she seemed to be getting older. Part of me wanted her to stay my little girl forever. She got bigger and gained better control of her arms and hands. She would look at you and hold eye contact. We of course loved it when she started smiling and laughing. When Grace was about two months old Alysia took her to New York to visit family and friends in the area. She also visited New York City and attended a wedding in Central Park.

At around three months things began to grow more difficult. It seemed that Grace became more irritable, cried more and was more difficult to soothe, and began having trouble eating. She also seemed to smile and laugh less frequently. We began to get worried and expressed our concerns to our pediatrician. He suggested that maybe she had a food allergy causing an upset stomach, which would explain why she was eating and smiling less. He suggested we switch to a specialized formula. Most likely Grace would start smiling again when she was feeling better. Despite her feeding issues, Grace did gain weight and was in the 95 th percentile at her four-month appointment. The doctor asked if Grace had been doing anything that looked like she was flinching and we said no. We tried switching formulas and it worked for a couple of days but then things went back to the way they had been.

I came home from work on Friday September 30th (my birthday) and could tell that Alysia had had a tough day. We called the pediatrician and expressed that we were growing more concerned as Grace wailed in the background. We noticed that maybe she was flinching some. He agreed that we would have an EEG on Monday. Saturday I was back at work and got a call from Alysia that Grace was flinching frequently in her sleep, that she had called the pediatrician, and that they had already arranged for us to go to the pediatric emergency room to get an EEG. I hurried home and we went to the hospital.

I had known that Grace was a “crier” but was told that both Alysia and I cried a lot too so I just assumed that she came by it naturally. Also, Grace was our first baby and neither of us had much experience with kids so we really had no baseline for what we were seeing. While we were in the ER Grace would cry incessantly at each procedure. Her cries seemed awful even for her and I could read the concern on the faces of the staff examining her. It started to sink in to me that something was not right.

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