July 9th 2013 was the third most important day of my life, the birth of my second son, our little miracle, Parker Andrew. As I snuggled his swaddled little being just moments after birth, I never thought that merely 4 months later, I would be told that my little bundle of joy had Chiari Malformation. I never thought that I would see his lack of milestone achievement; and I never thought that the feeling I just couldn't shake that "˜something wasn't right' would be validated by doctors and followed up with this diagnosis.
It wasn't until Parker's 4th month checkup that I mentioned my concerns to our pediatrician. At that point, I had noticed over the four months that he wasn't developing at the same rate as out first son (Carter, 4). At first I told myself that every child develops differently and I reminded myself to not over think this or compare the kids; but as the months went by, I just couldn't shake the feeling that something wasn't right.
The doctors agreed and didn't want to waste anytime due to the very obvious developmental delays. The first step lead us to a developmental specialist, where physical therapy and an education specialist were recommended for weekly visit; then we were on to a neurologist, who actually made the diagnosis. Currently Parker is undergoing further tests so the doctors can gather more information to ultimately decide if and which surgery will be performed to alleviate Parker's current symptoms and help prevent them in the future.
Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. When the neurologist called on the Friday evening in January to relay the news that Parker's brain was sitting in his spinal cord, although my stomach was in knots, my intuition had already told me something was wrong. Now that I knew its name, I would move toward making my little man the best he can be.
As parents, we always try to do what is best for our children. We go the extra mile, while cautiously making decisions to ensure our little miracles are healthy, happy and safe. We will continue to play that role, and even though we don't know what lies ahead of us, for now we are trying to make the best decisions we can. We will continue to fight this on-going battle to help Parker become symptom free. These are the reasons why we are asking for your support. Parker, along with our family, have a long journey ahead and this fundraiser will help us to focus on the most important part, Parker Andrew.
Thank you in advance for your support!
With deepest appreciation,
Ashley, Kevin, Carter and Parker Sweeney
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