Final Countdown for Early Bird Registration...

It has been a very busy couple of months for everyone but  we at Scrapping for a Cure wish you and your family a very merry Christmas holiday and a happy New Year!

We will be posting much more frequently in the new year but we wanted to give a final countdown reminder on our early bird registration. Only a couple of more days to get registration sent out. They must be post marked by December 31st. The registration form is located at our website scrappingforacure.com. If you need any assistance or have any questions please contact us at scrapping4acure@gmail.com

Thank you all for the love and support that you show us and  for supporting the fight for a cure for CF. May the new year bring many blessings and much joy to each of you.

----- Love, Tara & the Scrapping for a Cure Team

Back 2 Life, Back 2 Reality, Back 2 the Shoals

Back to Life

   Though it was so much fun at the beach, Kaitlyn and I are glad to be home and back into the routine of life. Kaitlyn went to visit her doctor last week and the results were great. Her lung function has leveled off since the previous month, something that hasn't occurred without additional medication help this whole past year. She has gained a pound and grown an inch! (Always great to hear for someone with a medical condition that makes it very hard to gain weight and flourish.) Her lungs sound clear and her lab work came back normal (for her). Was it the beach air? We don't know. She was also using essential oils, sleeping 10-12 hrs a day, swimming daily for exercise, and eating regularly. We are trying to change our lifestyle to include these extra health benefits to see if she continues to improve. Only time will tell. 

  On a positive note, she isn't scheduled to see her doctor until after Christmas. If all goes well, this will be our first year to spend Halloween, Thanksgiving, and Christmas as a family since she was diagnosed in 2007. She is so excited to enjoy Halloween this year. It has been so long, she didn't even know what a Trunk or Treat was and that our church hosts one for Halloween. My creative kids decided to make their costumes this year out of cardboard boxes.....becoming the 'Boxtrolls'. I am so proud of them for working together, helping each other make the costumes. 

We had so much fun this past weekend visiting my family Murry & Tara Smith for their annual Halloween Carnival....definitely a better experience for us than last year. Last year, after traveling the 3 hrs, we arrived at their house with a sick Kaitlyn. She had seemed fine when we left home, but by the time the party started, she was running a low grade fever and couldn't keep her eyes open. She ended up sleeping through the whole party. 36hrs later, she was admitted to Children's Hospital in Huntsville, AL with a collapsed lung, the other lung completely dense with mucus, and put on oxygen for almost two weeks. Since then, this year has been very tough for her. But she is such a fighter, and our personal hero. 

Scrapping for a Cure Update

   Though Scrapping for a Cure is many months away, our committee members are always diligently working to get it ready. Our favorite part??!! Research (by cropping)!! Jill Worley spent over a week traveling to different scrapbook stores and crops, having fun and getting ideas for our event. Tara Smith & I will be heading to Arkansas next week for a huge crop. We love being pampered as croppers!!! We are having early bird registration right now. This runs through December 31st, 2014. All early birds will be entered into our big drawing: Hilton night stay, Breakfast for 2, and $100 Scrapping Bucks to spend at the vendor booths during our 2015 retreat! Don't miss out! You can find more information and a registration form at our website, www.scrappingforacure.com.

  

Stories of the Beach Life: Ch. 3 Lord of the Sand & Homeward Bound

  Lord of the Sand & Homeward Bound

     Each week, we look forward to the weekend, when our whole family can enjoy the beach together. This past weekend was the best. We finally had perfect weather for the full weekend.It was also the Annual National Shrimp Festival, bringing in a lot of vacationers. We went to check out the festivities. The kids loved the spider climb!

 James had the opportunity to brush up on his sandcastle building skills. He even learned how to make trees! The kids enjoyed helping him. I enjoyed basking in the sun, soaking up the rays! I have found that though I think I have patience (when it comes to my kids), I do not have enough patience when it comes to building anything out of sand. 

  Once our boys left to head back home, Kaitlyn developed her second ear ache. Swimmers ear? Ear infection? Don't know, but at least it didn't get as bad has her first ear ache. She did run a slight fever again, but once we administered rubbing alcohol for a few days, it finally cleared up. So, with that in mind, we went out and bought her a swim cap and ear plugs. Hopefully we can prevent another ear ache. 

  As our time here draws to a close,  we share mixed feelings. We will miss the bliss of a paradise existence, but we are very anxious to get back to our family and normal life. Has the beach helped her? I really don't know. She still has CF....she still coughs. She will see her specialist in four days to review the difference. Thanks for following our personal experiment at the beach. We will keep you posted.

Stories Of The Beach Life: Ch. 2 Taming of The Do

Kaitlyn's Hair Cut

Two weeks with this strong ocean breeze, Kaitlyn decides her hair is just too long. If I wasn't so frustrated with the daily dreadlocks and the daily tears when it comes to brushing her hair, I may have encouraged to keep the long locks. But when she suggested cutting it all off, I figured, Sure! Grab the scissors and the camera and let's get to cutting!

And what kid doesn't dream of giving their own hair cut? Luckily none of my kids have done severe damage to their hair with scissors in the past. With my supervision, I let Kaitlyn help with cutting her hair....she got to make the first cut.

Say cheese! She was so excited to be the one cutting off all that beautiful hair.

'

And the last cut.

After a little evening by her mother (luckily she has curly hair and no one will notice if it isn't even), she sported a new hair cut. Kaitlyn loved it right away!

Today, out on the town, Kaitlyn was so excited to show off her new do. She loved her short, curly pigtails!

Love DQ's new ice cream cupcakes!

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: Gearing up for Fall

                                               

Gearing up for the Fall

Thank you for all of your support through Kaitlyn's trials. She is currently home with us and attending school with her friends. Though her main fight is with Cystic Fibrosis, she has also developed CFLD (Cystic Fibrosis Liver Disease). We found out last month that her Liver Disease is progressing and her platelets continue to decrease. Even a small cut has been a cause of concern for us these last couple of weeks because she isn't clotting well. The thought of wrapping her in bubble wrap runs through my mind often. Luckily she is a cautious kid....unfortunately, accidents still happen. But as we live, we learn. And we hope to get more pointers and ideas from her doctors next week on how to treat small accidents when they occur.

In less than two weeks, Kaitlyn and I will head to the beach for a little personal health research. In search for a better atmosphere for her condition, we are moving to the beach for a month to chart her health progress. The fall is usually her hardest time of the year, always landing her in the hospital for Halloween, Thanksgiving, or Christmas. The salt in the air on the coast has been known to help CF patients breath better and live fuller lives. We have been fortunate enough to find a condo right on the beach to help in our research, which also has great kid amenities to keep her occupied. She will miss her brothers as they stay behind to attend school, but she will be kept busy with her school work as well. We are so blessed to have a wonderful school district which supports us in her schooling, even if she isn't able to attend as often as her peers. We will look forward to our weekend visits with our family as they travel each week to visit us and enjoy the beach with us.

I am so excited I got to sign the contract for next year's event for the Hilton. Our Scrapping for a Cure committee has worked diligently the last four months, trying to find the perfect location in Memphis for our annual event. We wanted a place that will grow with us and will also help us in reaching our fundraising goals. Hilton is such a wonderful facility and I know we will feel so pampered during our event there. They have been working with us and meeting with us the past few month to help us see the potential of next year's event. Over the Memorial Day Weekend, our committee put in over 30 hrs of meetings, organizing registration and brainstorming on how to make next year's crop 'top-notch'. I am so thankful to have wonderful family and friends that have helped me grow Scrapping for a Cure into what it is today. And to help me dream about what it may one day be. For every dollar we raise and every person we are able to help educate about CF, the closer we will be to finding a cure for this disease.


                                               

Registration for 2015 Scrapping for a Cure is officially open! Our goal was to have it in place by November, but with great dedication, we were able to get it done by Memorial Day Weekend.  Early Bird registration will run through December 31st, 2014. One lucky winner will receive a one night stay at the Hilton, Breakfast for two, and a $100 shopping spree to be spent at our vendor booths during the event! Do not procrastinate signing up. We do have limited seating. Once the seats are filled, we will start a waiting list, but can not guarantee a spot. To be entered into the drawing, we need to receive your registration and full payment by the first week of January. Anything postmarked after December 31st, will not be entered into the drawing. Regular registration will run through March 13th.  We have so much in store for this year's event, I don't even know what to say my favorite part is. But I am very proud to say that we will have our dinners catered by Hilton and that all croppers will have the opportunity to have a 6ft cropping space. You can find the registration information on our website, www.scrappingforacure.com. Registration for classes will open January 1st.


                                    


A month ago, Tara Smith held a Fundraising yard sale in the Memphis Area to help raise money for our cause. This last weekend, Anna Steinke, Lisa Flannagin, and I also held a Fundraising yard sale, but in Russellville, Alabama. Between the two yard sales, we were able to raise over $2500!! We have such great community support! Thank you for helping us.

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