Stories Of The Beach Life: Ch.1 Beauty & the Beach

At the Beach

  As some of you may know, Kaitlyn and I are trialing a month at the beach, in hopes to help her lung condition. We have heard about other CF children experiencing great benefits with breathing in the salty air. With this past year being so hard on her, we decided to try it ourselves. Sept-Nov are always her worst months, making it the best time to try a change in scenery.

  For most people, a month at the beach would sound like paradise. Not for Kaitlyn. When it comes to sand, it was hate at first sight. And what is more abundant down here? SAND! After a few hours of school work, and her mandatory hour (by me) at the beach, Kaitlyn is itching to jump into the pool. Her favorite part of this experiment? the pool with her scuba gear. Her least favorite part of this experiment? missing her brothers and dad. What fun is the beach and pool without her brothers here to enjoy it with her? And most of the vacationers down here do not have kids with them.

After being stuck inside for a few days due to a severe ear infection and stormy weather, Kaitlyn was excited to get back to the beach Tuesday evening. She also found out that she didn't mind the sand so much, especially while she is playing sand monster or hunting for sea shells & sand dollars. 

    I had hoped that with a month at the beach, I could really catch up on some scrapbooking. With this in mind, I printed off hundreds of pictures and packed up tons of crafting supplies. But is reality ever what we expect it to be? After 2-3 hrs of school work, 2-3 hrs of meds and breathing treatments,  2-3 hrs of running with Kaitlyn down to the beach and pools, and our trips into town to visit the library and Publix, who has time for anything else? Well, at least we make time each day for a little craft time, giving me an hour or so to make a dent in my pile of pictures! 

  I am just so proud of Kaitlyn for staying on top of her school work and keeping her spirits up. It's got to be hard stuck with her mother for a whole month and only having extra playmates on the weekends, when family comes to visit us. Once we have returned home, Kaitlyn will see her doctor to see if the ocean breeze has helped her lung function. I can't quite tell if she is doing better or not. She says her chest feels better. Though her cough isn't as bad as it was when we got down here, she is still coughing. But we still have 16 days to go to make a difference. And on the up side, her appetite has been great, which is crucial for CF kids!

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