The Joys of having CF

The Joys of having CF

Monday, November 29, 2010

In just 24 hours...

In just 24 hours, we should know when we are going to Bora Bora, Tahiti. Woohoo!! I'm so excited to see what the board says. I'm 102% positive the board is going to approve my wish. I'm hoping we go to Bora Bora in January or March(when it's cold here in Wisconsin hehe). I'm hoping closer to January. I can't wait to go to Bora Bora. I'm soo excited. I can't wait to go get my hair done before we go. I can't wait to go get mani/pedi's with my closest family friends before we go. This trip is going to be soo exciting. It's truely going to be a wish come true, and a trip of lifetime that I'll remember forever. This trip is going to give my family and I a time to just relax and spend quality time together.
Well this chica needs some sleep :) will let everyone know as soon as I know anything!!

Saturday, November 27, 2010

3 days!!!

Wow!! in just 3 days we'll know whether or not the board approved my wish to bora bora, and then the planning will start. i am 101% positive that the Make~A~Wish board will approve the wish. the only anticipation now is finding out when we go! i am exited beond words. this is truely a wish of a lifetime that i and my family will remember forever! so--i will DEFINETLY let everyone know what the board said, and when the soonest possibitlity is we could go :)
on another note, i hope everybody had a wonderful Thanksgiving. i had a great one. spent it with wonderful family.
today is my wonderful supporting and loving mommy's birthday :) she is the best mom a girl(especially with cf) could ask for. instead of her title being M.D. or Dr. her most wonderful title for me is M.O.M. Happy Birthday mom! Love you :)

**notice the white netting :) this is in September 09' a day or 2 after i came out of the hospital**

and lastly, i wanted to share a wonderful poem i read at a craft sale today. it was beautiful. it could almost bring you to tears. Enjoy this read:

Spending Christmas with Jesus Christ

I see the countless Christmas trees
Around the world below,
With tiny lights like heavens stars
Reflecting in the snow.

The sight is so spectacular
Please wipe away that tear
For i'm spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs
That people hold so dear
But earthly music can't compare
With the Christmas choir up here.

I have no words to tell you
The joy their voices bring
For its beyond description
To hear the angels sing.

I know how much you miss me
Trust God and have no fear
For im spending Christmas
With Jesus Christ this year.

I can't tell you of the splendor
Or the peace here in this place.
Can you imagine Christmas
With our savior, face to face?

May God uplift your spirit
As i tell him of your love
Then pray for one another
As you lift your eyes above.

So let your hearts be joyful
And let your spirits sing
For i'm spending Christmas in Heaven
And i'm walking with the King.

Friday, November 19, 2010


Last 2 pictures :)

Before heading down for supper :) Rob had to leave early(and he finished before all of us), so from left to right (Deanna, Mike, Me, Jennifer, Daniel)

The morning after, and feeling great :)


So, WE DID IT!!! We climbed 47 floors, 94 flights, and 1,034 steps. It was hard but we did it. There was NO-WAY i was quitting. It wasn't a matter of winning first, it was a matter of finishing that mattered. I am so proud of my team for finishing. It only took my uncle(in the red) 11 minutes to finish. It took my dad and are other friend Mike around 13 or 14 minutes, and it took our friend Deanna 23 minutes, and it took my mom and I 24 minutes. Trust me it seemed like it took forever, but it was such a great acomplishment, and I don't believe in quitting. I was so proud that I finished. There was also a lady there who had recieved a double-lung transplant last year and she climed the whole thing. I am also very pround of the fire fighters, and police officers. The fire fighters and police officers climed the whole thing, and they had to wear full uniform!! Airtanks and all. and police officers had to wear bullet proof vests and all. I am so thankful that they do this for CF. It means so much to me that they did that for us, and for CF. The winner of the climb, I believe the guy was in his late 40's early 50's. He finished in 4-5 minutes, and this is the huge part. He was a Fire Fighter, and WON in FULL UNIFORM!!! WOW!! that is impressive. I am so honored, and want to say Thank You to all of them for climbing, and I want to also say Thank You to my team. We are definetly doing it next year(oh, and training better before also).

(my number-I wore mine on the back of my shirt)

My team-from left to right(Mom, Mike, Rob, Dad, Deanna, and Me)
Before we headed down to the start line.

one of the MANY fire fighters

2 of the many fire fighters getting ready to start the climb.

another fire fighter who wore his air mask and everything

crossing the finish line!

Deanna crossing the finish line!


Wednesday, November 17, 2010


Update: PASSPORTS ARE IN!!!!! we got them in the mail today. Hooray!! will post more later :)

Tuesday, November 16, 2010

48 Hours Away

In almost exactly 48 hours I along with 5 others will be "Climbing for A Cure". I'm very excited, and still thinking i'm crazy BUT it's for a good cause. I will try to remember to take pictures of the event, and post them. Will let you all know how the climb went :)

Sunday, November 14, 2010

Sweet 16

Well, i haven't posted for a few here goes. well as some of you may or may not know, on Friday November 12th, I celebrated my 16th birthday. for those of you who have CF you know how wonderful every birthday is. It's truely amazing. then I also got my license! Yay!! it's very cool. I do already have a car, and now i can actually drive it by myself. It was truely a great and wonderful thing. I can't wait for sometime this week or next week, because we are going to a local pub & brewery(The Great Dane) for my b-day. it's supposed to be sooo good. we ran out of time on Friday because mom and I had to be in Milwaukee, WI later that evening(where i got to spend my b-day with wonderful friends). and this coming Thursday we're doing our climb for a cure. i think i was crazy. yikes!! but it will all be good. we'll have fun, and the best part is knowing that the money we raise goes to improving the cure for CF. oh, and another thing this snow is crazy! at least it waited till after my drive test but man, are we in for a white christmas, and is it just me or is christmas music on a little early? i think yes. but hey that's okay i love christmas. it's the most wonderful time of the year :)

Tuesday, November 9, 2010

Holy Man!!

holy just 9 days!!!! i along with 5 others will be climbing the U.S. Bank building in Milwaukee WI to raise $ for Cystic Fibrosis to help find a cure. now i think i must have been crazy when i signed up for this but in just 9 days i'll be climbing 47 floors, 97 fleights, 1,034 steps..holy man!!! Pray for me. but this is a very crucial time in the CF community because they've found the cure for CF, and we are in need of raising $ so they can keep researching. so if you are able to at all, dontate anything no donation is to small please email me at or visit

Let's make CF stand for CURE FOUND!!!

Monday, November 8, 2010

no news is good news :)

well no word from Make~A~Wish yet :( we sent in for our passports last monday-November 1st. my wish coordinators are 99.99% positive that the Make~A~Wish board will approve my wish.
now, my original wish(s) was to meet my ultimate ultimate favorite person(s) in the world. John Travolta or Rascal Flatts. Now that is what I was originally going to wish for, but with Make~A~Wish you can only get a wish until your 18 then you don't qualify anymore. well with celebrity wish's it can take 2+ years to make them granted, and by that time i'd be 18. so i decided on a trip, because i know someday their is always a way to meet John Travolta and Rascal Flatts. if there's a will there's a way. anyways, we had friends that went to Bora Bora and LOVED it. they said it was breath-taking. so i started doing research on it and found it to be amazing! i immedietly new it was it, especially when i say the huts over the ocean with glass bottom floors, and found out the whole island was only around 35 miles. i love water and i new the minute i saw the glass bottom floor huts. it was it. so anyways...
i am super excited to go to Bora Bora, Tahiti! especially if it's between January-March of next year, becaust that's when its super cold here! i can't wait to go shopping in Bora Bora. I can't wait to wear my new croc sandals :) and use my new purse. I am super excited to go get a few new clothes, but what I'm most excited about is being able to spend a care-free, stress-free week with my family. the one's i love the most. my greatest supporters. the ones who are always there for me. i wish everybody could expierence the feeling of knowing that this is a once in a life-time opportunity. it's the most amazing feeling in the world. but the one thing i really wish is that i could bring everybody in my family with me, because i know most of the people in my family will never get an opportunity like this. i so badly want everyone to get this opportunity.
i can't wait till one day i can give $$$ to the Make~A~Wish foundation so more children with illness's or are loosing their battle to soon, can get their one wish in life. i so wish for children who loose their battle to soon, i hope they are able to get their one. last. wish. they will remember it forever.

This picture is a picture of some of the huts over the ocean where you stay :)

This picture is of the glass bottom floor-to the left is a couch, and to the right is the bed. you can swim under the i told my dad one morning i'll swim under and knock on the glass and wave to him :)

Thursday, November 4, 2010

Oh, the love for technology & an Update!

Okay, so first I have to complain about technology. I had great intentions of doing a blog post earlier tonight(Wednesday), but all of a sudden out of the blue, our internet stopped working for about 3 hours. What the heck! Mom couldn't figure it out. The bill had just been paid, so it couldn't be that, there's no storms, no rain, no snow, what could it be. So she tried to call customer servicer, and no luck. It was busy. So anyways about 10 minutes ago 11:55 p.m. it started working. WTH!?!?!? Oh, the love for technology.
And another thing, has anybody been woken up in the middle of the night because their phone decides to finally recieve a text message from...5 hours ago CRAZY!
Anyways...sorry for the ramblings :)
***UPDATE on Make~A~Wish***
Okay so on Monday(November 1, 2010) we(mom, me, and my sister) sent our passports in. woohoo! then we emailed our wish fairy/cordnater. She said that in the next week or so the board should have made their decision whether or not to approve it. I am 105% positive they are going to approve it, heck one of the people said that she wanted to go with :)

Well I will keep everybody updated! This girl needs some sleep :)

Monday, November 1, 2010

If you can: Help is GREATLY appreciated

As some of you may know, I am doing something called Climb for a Cure. It is on November 18th in Milwaukee. I, along with 5 others, are climbing the US Bank Building. It is 47 floors, 94 flights, and 1,034 steps. We are doing this to try to raise money for CF. As many of you know, donatios are greatly appreciated now that we know the cure is only 2-5 years away! We are in need of all donations possible! so they don't run out of money for research. Any amount small or large is apreciated. If you are able to help please let me know. You can contace me via email: or leave a comment, or donate online. at
All donations are tax deductible. It is greatly appreciated, or HEY if you aren't doing anything on November 18th from 6-9 p.m. in Milwaukee feel free to come along and climb. Let me know then we can get you registered. Keep me posted! Thanks