Tuesday, October 6, 2009

Today's Tidbits

Again, not much of a blog worthy day here, but a random tidbit of information basically about CF and our little family.

Tidbit #1
I hate CF. I guess, if you have read any of my previous blogs, you probably already have gotten the idea that I hate CF. And yes, Hate is a very strong word and I don't use it often, but in this case, I HATE CF (me yelling it). Although I hate CF, I am very thankful for a lot of things that have become to our family because of it.
  • I am thankful for my little girl. She is the love of our lives and the most important thing in the world to us. I can't imagine a day that we didn't have her in our lives, nor a day that we won't have her in our lives.
  • I am thankful for the doctors, nurses, and medical people that take care of my baby when it is needed. We don't have to make the trip often and I am also thankful for that, but when we are in need of medical help, they are always there. They never seem annoyed that I call at least 1 time per week, or sometimes 2 or 3 times a day. They are always very helpful and understanding.
  • I am thankful that I get to stay home and take care of my baby. Although I believe that daycare and social interaction is very important in a childs development, I am very grateful that I have the opportunity to keep her safe from germs/bacteria/infections.
  • I am very thankful for the cystic fibrosis foundation. Without them, the life expectancy would not be increasing each year. Their would be no new treatments, and they wouldn't be as close to a cure as they are. We will see a cure within my daughters life. I know it.
  • And finally, I am thankful for all of my family, friends and aquantances that donate to our cause and other causes to help research continue for all of the nasty and horrible disease out their that affect little people and big people the same.

Tidbit #2

Well speaking of donations, I am beginning to think about all of the fundraising we will be doing for our Team Roses for Rylee. We have set a goal of raising $10,000.00 this year and believe we are very capable of meeting this goal. Here are a list of our fundraising efforts that will be taking place this year.

  • Roses for Rylee bracelets - These are the typical rubber/silicone bracelets (like the livestrong ones). They are purple and say Roses for Rylee on them. We have size Large (adults) and size Small (children). We have been selling them for $3.00 each or 2 for $5.00. - The thing I find amazing about this is how far they can travel. I have a friend in Tuscon that ordered 10 of them. She said she was going to give them to her coworkers as she see/assists with a lot of Lung Transplant patients. Well on her facebook, she was tagged in some pictures and as I was looking at them, I noticed a purple bracelet on someone I didn't know. I asked if it was a Roses for Rylee bracelet and they said it sure was. I was amazed at how someone who doesn't even know my dear R. would wear a bracelet in her honor. We donate 100% of the profits (so every penny we recieve for a bought bracelet) to the Cystic Fibrosis Foundation. We have lots left so let me know if you would like some.
  • $10,000 from 10,000 people. This will be a letter that we will send to everyone we know. We will ask people to send $1.00 to us and then forward a letter with our story to 10 other people. We are hoping we can get to $10,000 through this. The thing about this, is it only costs $1.00 plus 11 stamps. Easy peasy huh. Usually families do writing campaigns asking for donations. We have a very hard time asking for money, however this form of a chain letter may make it easier. We will be sending them out with our christmas letters this year. If we know you, expect a letter asking for a $1.00 donation.
  • Rock for Rylee Carnival. We are planning to do a carnival in the spring however with the economy it is looking a little tougher then expected. Our plan was to get donations of money, prizes, supplies, etc. from local businesses and then all profit would go to the CFF. Well, many larger business have a lockdown on all donations/giving due to the economy. Sad but understandable. We will see how this works out later on when we here back from some businesses.
  • And finally, we will be partaking in the Great Strides Walk. This is the walk that raises money for the CFF. Last year we walked and the total raised at this local walk was over $91,000. It's amazing how 24 teams of people can raise that much money. We love it!

Tidbit #3

CF has changed our lives. I was never a germaphobe but am now. My hands are raw from washing them and using hand sanitizer, I am paranoid about tap water, and anytime I hear the words bacteria, flu, virus, swine flu or bugs I get freaked out and run and hide in my house. We have quarintined our little R. to the house for the flu season. She goes out when she won't be around anyone, like for drives in the car, pumpkin patch, swinging in the back yard, but she does not go into any stores, restaurants, businesses, etc. She did go to the clinic to get her flu shot and I about had a heart attack taking her around all of those people with flu symptoms. However, I love my life, and I love my little girl, CF and all.

Tidbit #4

Non CF related - I am going to go shopping this weekend! I am so excited and plan on getting R's winter clothes, shoes and some other little things for me maybe. And we are eating at a yummy italian restaurant and it's all girls going. I can not wait!

Well again, a lot of randomness and nothing to exciting, but none the less, important to us.

And one last push - Get your Roses for Rylee bracelets TODAY!

1 comment:

  1. I can completely relate to this post! I hate diabetes like you hate CF! Have you read this CF blog -- Confessions of a CF Husband -- http://cfhusband.blogspot.com/2008/02/fast-track.html? You should check it out!

    We would love two bracelets. Please let me know how to pay you for them.

    You will have a blast on your "girls" shopping spree! I wish I could join you! I think I am going to sneak out for a pedicure this weekend!