May-Cystic Fibrosis Awareness Month

Happy May Day to everyone! It's not just May 1st though, it's also the first day, of 31, to raise awareness and spread the word of Cystic Fibrosis. Two years ago, I had no idea what CF was; in fact, Derik and I first thought it was like Multiple Sclurosis, and thought it had to do with the muscles and walking. Shows how little we knew right? To raise awareness I thought I would re-tell our families CF story from the beginning, just so everyone knows how close to our heart it is and why we push so hard to raise money for the Cystic Fibrosis Foundation. Zoie got the regular new born screen just like every other baby. A little prick in her heel at the doctors office and we were on our way home. Two weeks later as I was sitting on my computer, Zoie napping, Derik at work, I recieved a phone call that will forever remain in my head. It was her pediatrician on the other line telling me that her new born screen test came back abnormal, and she may have Cystic Fibrosis. How kind was he to stay on the line with me for 30 minutes as I started to cry, and ask questions. I called Derik in a panic, our parents brought us over dinner, I held my new perfect baby tight in my arms, as I rocked her and asked God why. I really truly did believe it was the end of our world. Two weeks later we headed down to Childrens for a sweat test, where we then found out from her pediatrician that Zoie's salt levels were elevated, but not too much. This could mean she had it, or it could mean she didn't. It would take genetic testing to figure it out. Two months later, as we sat at Children's with Ruth and Dr. Acurso, who are now some of our dearest friends, they told us the news that Zoie did for sure have CF, but in a mild form. I think this was probably my fourth time hearing this, but this time for sure, and crying....It takes a lot of tears until you fully accept that something is different about your baby when they look so normal. Since then, Zoie has had about eight hospital stays due to her CF. Coughs, congestion, and pancreatitis. She also has had two surgeries for g tube placement to help with weight gain. Zoie has a mild form of CF which means she has a normal functioning pancreas, but her lungs are like a 20 year old who has smoked for years. To let you into our world a little bit, this is what the day of Zoie looks like due to her CF. When we get up in the morning, we put her vest on her and she wears it for 15 minutes to loosen her lung secrections and mucus. She gets extra salt and vitamins with her breakfast because she looses more salt than the average kiddo so we have to replace it. We head to a playdate, but first we must make sure no one is sick because Zoie picks up germs a lot quicker than other kids, and if she gets sick, she usually gets really sick. We do another vest treatment for 15 minutes in the afternoon and usually sanitize our toys. We may head to the doctor for a weight check now and then because Zoie doesn't digest the nutrients in food like she should, but doctors say she doesn't need enzymes because her pancreas functions. Before we go to bed at night, we say our prayers and thank God for another healthy day, and pray Zoie lives a long happy life with the help of her doctors at Childrens and all her wonderful suppost systems. Zoie is our Rae of Sunshine, she is our world, she is one of the faces of CF. If you didn't know what CF was before this post, now maybe you understand it a bit better and realize why Derik and I are so involved and try to get everyone educated and involved as well. There are many ways to raise awareness just by spreading the word or joining in on a fundraiser this summer. Please consider joining our Great Strides Walk June 8th to support CF and a cure for this genetic disease. You can go to the following site and register under our team, "For the Love of Zoie." http://www.cff.org/great_strides/ Thanks for listening to our story <3