I'll start at the beginning and go from there. Quick back story on us, if you don't know us very well-- James is 29, active duty Army, has been in for 4 years this month, did a year long tour to Afghanistan right after Keagan was born, and is now at his second duty station, Fort Bragg, NC (Fort Drum, NY before that). I'm Ashley, I'm 22, and I'm in school pursuing my associate's in medical assisting and then planning to get my nursing degree after that. James and I have been married for about 3 years and together for 3 1/2 (we met in basic training). Keagan is two years old now, and was born on October 29, 2008 in a huge snowstorm in NY after a power outage at the hospital (which made me soooo thrilled let me tell you). He is obsessed with Mickey Mouse, anything with wheels on it, daddy's video games, popcorn, and carrying every. single. stuffed. animal. around with him at all times. He loves to give hugs and kisses, and identifies EVERYTHING, even if he's wrong.
He seems like a completely normal boy, but I guess he's not. It's hard for me to accept that all the time, because he appears completely perfect, and what mom wants to consider that anything is wrong with her child? In January of 2009, just after James got home from Afghanistan, we started to notice that Keagan was acting as if he had headaches, crying more often, and seemed dizzy and disoriented as the day progressed, and he was falling down. A LOT. I'm talking like 40 times a day, for no reason, just step, step, faceplant; or even standing still, wobble, faceplant. He had been walking at this point for about 4 months with no noticeable balance issues, so when we noticed it, I just made him a routine appointment and took him to see his pediatrician on base. I assumed, worst case scenario, that he was like my brother and had some inner ear infections. The doctor did a thorough check of him and said that he was 100% healthy. And then she looked me in the eye, put her hands on his head and said, "take him to the emergency room right now. I've never had something like this turn out to be nothing, and I just have a feeling." Wide eyed and trembling, we went straight to Syracuse University Hospital, almost two hours away. We checked him in, and they did a sedated MRI on him. A few hours and MANY neurological tests later, a resident on the neuro service came in and said, "he has a Chiari Malformation." I asked what the heck that was, and he said something unintelligible that gave us the impression that it was some type of tumor that would require immediate surgery. Then he just WALKED OUT! A nurse, God bless her, came in a bit later, saw the panic on our faces, and went right out to Google the diagnosis for us. She came back and informed us (because as it turns out, this is a pretty rare condition, especially in such a young baby) that it was not a tumor, and while she couldn't say whether he'd need surgery or not, that the doctor had misinformed us.
What we began to uncover was this: "Chiari type 1 malformations (CM1) occur in the region where the brain and the spinal cord join. In this disorder, the portions of the brain called the cerebellum and/or brainstem lie lower than usual. Often, a portion of the cerebellum called the cerebellar tonsils protrudes out of the base of the skull into the spinal canal. This protrusion causes pressure in the brain, contributing to the symptoms people experience. The cause of CM1 is not known. Some CM1 cases are believed to be present at birth. There are many symptoms associated with CM1. These symptoms may include headaches, especially at the base of the skull, dizziness, double vision, weakness in the arms, and/or difficulty walking. When symptoms are present, they are often vague or nonspecific. As a result, the diagnosis of CM1 is often delayed until more severe symptoms present themselves or after current symptoms persist for some time." full text
When we got back to his pediatrician, she told us that it was not an extreme case, as the low lying portion of his brain was only 5-7mm descended. She told us to watch for seizures, muscle weakness, gave us concussion symptoms in case a hit was too hard, and taught us how to check for signs that he was worsening. Otherwise, it was basically a watch and wait type of diagnosis. We were told to follow up with MRIs every 6 months for the rest of his life, avoid contact sports and trampolines, and help him be as normal as possible. Many people have CMs and never have any idea, many people don't find out until much later in life, and many people are fully functional with zero progression for their entire lives. A year later, we are only beginning to understand how this will affect all of our lives in many different ways.
I'll post again soon with a more recent update, but I figure the back story is enough for one post.
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