Wednesday, August 13, 2014

Kaitlyn's CF Journey: An Update On My Little CF-er

As a parent of a little 'CF-er', I know more about what Cystic Fibrosis is capable of doing than I wish I did. Yet, I still feel like I don't know enough to keep her well at all times. Cystic Fibrosis affects the health of over 70,000 people worldwide, and yet each case is a little different. CF causes mucus to build up in various parts of the patients body and causes them to not function properly. Usually it targets the lungs, digestive organs, and/or liver, but it can also affect growth, glucose levels, bone density, and fertility. Children and adults with CF can look completely healthily, and yet it is a deadly fight they are battling each day from within. Before decades of research, the life expectancy for children with CF only averaged 5-10 years of age. We are so blessed to have dedicated organizations such as CFF to help in research that has raised the life expectancy to 40 years of age. And yet, this disease still takes the lives of many children. 

Kaitlyn's disease first started affecting her lungs and digestion when she was barely a year old. Her first hospital visit coming at 18 months old, and reoccurring every 7-12 months. At age 3, we found out that CF attacks the liver and Kaitlyn was no exception. With added medications, we and the doctors hoped to slow down the damage that CF does to the liver. In 2012, we found out that Kaitlyn's platelets are slowly dropping due to another CF induced health condition called portal hypertension. Not only is her CF taking a toll on her lungs, digestive organs, and liver, but now this includes her spleen. Since then, Kaitlyn has been in and out of the hospital regularly. 

Most hospital visits last 10-14 days due to IV antibiotics that are given for that duration of time. This past 10 months, Kaitlyn has been hospitized 5 times....getting multiple IVs with each visit. She has even started to help the nurses with her care. She loves to watch them take care of her in hopes to one day be a nurse or veterinarian. She helps them take care of her IV and has even helped them get the IV out at discharge. Hospital visits are no fun, but Kaitlyn is never shy to show off her smile as she tries to stay cheerful.

I am so proud of my little 'CF-er'. She is such an inspiration and faces her challenges with  such bravado. See, she just went through a surgery this week and scared us all to death. Though her condition wasn't life threatening, a two hour surgery for three separate procedures can wear down anyone's nerves.  As they prepped her for surgery, she had us all in smiles as she entertained us with witty jokes and laughter. Through prayers and support of friends and family, and comfort from a loving Heavenly Father, we were able to find strength to get through our trials. Though we are still in the hospital, Kaitlyn is doing so much better and is wearing a smile. This trial in life has taught me to appreciate the good times and trust in our Heavenly Father's love. 

I am so thankful for Scrapping For A Cure and the difference we can make by raising money for CFF. This is a disease that needs the support of our communities to help all that suffer from it. Our event committee is so excited about next year's crop!

-Rachael McGuire, director of Scrapping for a Cure

1 comment:

  1. Thanks so much for sharing!
    Hope Kaitlyn is feeling better! Give her a hug, so excited to see how great your Scrapping for a Cure group is supporting you! I'll keep you all in my prayers!