Monday, April 15, 2013
Seize: The Story - Nolan Moon
We were told he had severe GERD and was aspirating most of what he was taking in. Nolan was also diagnosed with a cleft on his larynx and a narrow trachea.
It seemed were always at the Doctor or in the Hospital, Nolan had round after round of bronchitis, then aspiration pneumonia. Shortly after his first birthday, our world changed: Nolan had a grand mal seizure.
We had an EEG with a low percentile of normal brain activity and learned he had been having myclonic seizures for awhile. We began seizure medicine and watched how he would react.
At 14 months, Nolan began Early Intervention and Feeding Therapy. By 17 months, we started a battle with insurance to have a percussion vest for Nolan. The vest was helping his breathing tremendously. It seemed every step of our journey, something new was popping up: C Diff, RSV, high metabolism, multiple surgeries. We were grateful to have some answers, but there was no umbrella that covered all of Nolan's symptoms. It was time to start the journey with genetics, only to learn there was a year long waiting list.
Our list of therapists and specialists hit the double digits, and our education in all things medical reached closer to the thousands.
After what seemed like forever, we were thrilled to learn we had won our battle with insurance for the vest! What a huge burden had been lifted!
Just a few weeks ago, we saw a new tremor pattern emerge and we rushed in for an emergency EEG. One night, the tremors lasted 40 minutes. One of the hardest decisions to make as a Mother is which doctor's appointment is more crucial. We cancelled his sleep study in order to do this EEG. We prayed for him to have a seizure or one of his new tremor episodes. Such an odd prayer, but we needed some answers.
Our doctor promised to call us with results the moment he had them in hand. Within 30 minutes of leaving the hospital, our phone was ringing: Nolan has epilepsy. We knew this diagnosis was probable, but it is different when it is your child. We are grateful for the diagnosis and feel as though we can move on taking care of Nolan now that we understand his condition better.
Nolan is all boy: He loves cars and trucks. I can nearly repeat the movie Cars word for word. He also loves fish and his big sister, Brooklyn.
If you would like to follow Nolan's Journey you can visit his blog: http://ironmanmoonsjourney.blogspot.com/