Sunday, July 11, 2010


About 3 months ago, Emily's therapists & I noticed that Emily was having periods of jerking her upper body, several times in a row. Her arms would jerk upward & her head would nod slightly. There didn't seem to be a trigger for the episodes. They would happen while she was sitting on the floor, in her highchair, in my arms, during therapy sessions, whenever, wherever. At first the episodes were fairly infrequent, but then started to increase to approximately 10/day. I took Emily to the pediatrician & after I described & demonstrated the episodes to her, she ordered an EEG (Electroencephalogram). The test would measure Emily's brain activity. The doctor was looking for any abnormal brain activity/seizure activity.

Within days, I was at the hospital with Emily getting her EEG done. Emily had to be sleep deprived for the test. The key was to get her to sleep during part of the test so they could record her brain activity while she was awake & asleep. I had to keep her up late the night before & wake her early the next morning. As always, Emily was a trooper!! When we arrived at the hospital, the technician hooked up 22 electrodes to Emily's head with a paste. Emmie was so patient. She laid down & I sat in a chair next to her, rubbed her hand & talked to her. She had a hard time getting to sleep so the tech swaddled her in a blanket & rubbed her cheek with a cotton ball, that did the trick.

During the test, the technician & I started talking about our families. I told her about Eric's deployment & my 2 children with special needs. I always feel it's important to share my story. I don't complain or want people to feel sorry for me. I always feel like we can all learn something from each other & the only way to do that is to listen & share. It's important for us as human beings to know that we are all going on the same journey, but on different paths. In one way or another, we all experience the same things.

Prior to the test, the tech had asked me how often Emily has these episodes & when they started. She was simply gathering information for Emily's file. In the middle of the test, she asked these same questions again. In my heart, I knew something wasn't right. Why would she ask me the same question again???

After the test was over, I asked the tech if she could tell me what she saw on the test & she said she couldn't. As she walked Emily & I down the hallway, she put her hand on my shoulder, gave a little squeeze & said, "You take care of yourself & that little girl". My heart sank & I knew something was really wrong with Emily. I tried hard to think that maybe I was reading into it. I am always the drama queen & I always look for the deeper meaning of things. Deep down, I knew something wasn't right with Emily.

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