Sunday, November 16, 2014

My CF story part 1

I had this thought the other day. I have known different people over different parts in my life, but besides my family, very few people have been with me throughout my entire life and know all the nitty gritty details of my 21 (almost 22) years in existence. Therefore, a lot of people don't know my full CF story. Like I've said in the past, CF is not my identity or the thing that makes me unique compared to other people, but it is a part of me. Maybe it's because my birthday is in a week, but I have this strong desire to look back over my CF journey and reflect on my story. Over the next week, I'm planning on writing several blogs that chronicle my CF life. Stay tuned!

Part 1: Birth-Elementary School

I was born on November 24, 1992. Mom had been on bed rest because Katie and I were a little troublesome in the womb (meaning we tried to come super early). When Katie and I were born, my parents had no idea that I would have a problem. But, unfortunately, I was born needing meconium ilius surgery asap. Usually, that's an indication that a baby has cystic fibrosis. I was rushed to a different hospital, and hours after my birth, I was in surgery. I was in the hospital for a long time under the condition of "failure to thrive" while my twin sister got to go to the comfort of home. At two weeks old, I was officially diagnosed with cystic fibrosis. Eventually, I was released from the hospital, and my big happy family all returned home to Baytown. My parents did my first round of home IV antibiotics when I was 8 months old (they've always been pretty capable people). They love to tell the story that on Halloween night, I had pulled the IV out (yet again...I tended to do that a lot). The home health nurse had to come over and restart my IV. Trick or treaters would come to the door and ring the door bell, and they would hear infant screams coming from inside the house. Those weren't fake screams, people! Anyway, my parents learned the routine of being the caretakers of a child with CF as well as tried to figure out the ropes of parenthood and caring for two baby girls. I can't imagine the stress they must have been under. Just a few years later, my parents had another baby--my little brother Scott. They now had three babies, one with CF. Throughout my younger years, my CF was relatively under control. I was compliant to my therapies and my medication, and my parents always made sure I was taken care of well. When I was in kindergarten, I had my first real hospital stay that I can remember. I had to have an NG tube (a feeding tube that goes down to the stomach through the nose). I blocked most of this hospitalization out of my memory because the NG tube was traumatizing for me. My mom said I wouldn't look at people, and I was no longer my spunky, energetic self. Praise God, I made it out of that hospitalization alive and doing better. As I continued to get older, I would get IV antibiotics about once every two-three years--once in third grade, and once in fifth grade. Overall, my health was pretty good. I learned how to swallow pills when I was in first grade so that I could take my enzymes. As well, I got my Vest in first grade, which made treatments significantly easier for me because my parents did not have to sit with me and pound on 8 spots on my chest to shake my lungs manually. Life was pretty good, and besides a few bumps along the way, cystic fibrosis didn't get in my way very much.

Stay tuned for the middle school and high school years!

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