"Special Gift from God"

Something that I have learned along my journey with Lil' Chris, is that I am so much more capable than I ever thought I was. The Lord has really given me the strength to get through and to do certain things.

For instance...I went to an outing the other day with some fellow CF moms and we got to talking. One mom said that...well, I can't remember her exact words and I hope I don't get this wrong and offend anyone, but she implied something like she has a hard time doing fundraisers and such, b/c it brings up "things". I'm sure other CF moms out there know what I am talking about. We do our daily routines of enzymes, vitamins, Vest, and for most nebs, but that's what it becomes...a "routine". Then when we do fundraisers and have to talk about what's REALLY going on with our child/children...that's when it gets "real" again. We all get this from time to time where we come back to reality and go "Whoa, my kid really does have the horrible life threatening disease!"

So anyway, this CF mom tells me that she is a fan of my blog and knew who I was as soon as she saw me. I had never met her before and never knew she was a fan of my blog...it's nice to have fans;) I felt like such a celeb;-) LOL Anyways...she knows from my blog that I do a lot of fundraisers, so she asks me "How do you do it? It's hard for me, b/c it brings it back to reality for me."

I proceeded to tell her that it's hard for me too at times. Sometimes when I do my CiCi's events and I go around to all the tables and talk to all the guests about my son, and all he has to do, and his life expectancy is only 37... it gets to me and I start to tear up. That's usually when I try to walk away and those are the people who usually end up donating more. I don't do it on purpose, but sometimes when you are saying stuff and the people you are talking to look at their healthy kids sitting next to them...you can just see it in their eyes that they are thankful that their children don't have CF. That gets to me, b/c I WISH I could think the same. I WISH my son didn't have a life threatening disease. I WISH I didn't have to do ANY fundraising.....but I do, and I do it for my son and all CFers.

To get back to my point...For the most part, I can talk about CF to anyone at anytime and it not bother me. Sometimes people look at me like "Wow, how are you able to talk about it so freely like it's nothing?" Well, I surely don't think it's nothing, but for some reason I can. I think God gave me this special ability, b/c he knew I was going to have Lil' Chris someday. He knew that I was going to have to fund raise for his life. He knew that I could handle it. I never understood why I could talk about hard or sad things like it's nothing . . . until I had Lil' Chris.

Now don't get me wrong, I'm not saying that this is how all CF moms are or should be. This is just how God made me and He is using me to get the word out there about Cystic Fibrosis. It's through the strength of God that I can do it and am able to do it!

Just curious...any other CF moms or CFer's out there feel that they have this special ability too??
M

PS. We just got to 17,000 hits today!! Woo Hoo!! Thanks everyone who reads this blog and passes it along. I greatly appreciate it! BTW...Hi Melissa;-) LOL

Tumbleweed Fundraiser Today!!

Today is our first fundraiser at Tumbleweed Restaurant!! YEAAAA!! Wait....is it snowing again??? YES!!! Of course it is!! I'm having a fundraiser!! It always snows when I have a fundraiser!!

This is my 3rd fundraiser so far this year and it has snowed EVERY time!!! Today's snow is a lot worse than the other 2 fundraisers, so I'm not expecting much. A group of people from work were going to go have dinner, but then decided not to b/c of the snow. One girl gave me $10 and said "Here, I'm not going out in that snow!" I just laughed:) I can't blame anyone for not wanting to drive in this crazy snow. I didn't even want to, but I picked up my food "to go" on my way home from work today. While I was waiting for the girl to go get my food, I slipped one of the coupons to some people who were eating...LOL :) They'll never know;) LOL My hubby is working tonight and he is going to get dinner there tonight, so at least there will be 3 people who gave the coupon so 10% will go towards a cure:)

If it does stop snowing(doubtful since there is a snow advisory until 7pm tomorrow) and you would like a coupon to go to Tumbleweed... then click the link below...
Tumbleweed Coupon
Thank you to those who will risk your lives in this snow for Cystic Fibrosis!!
M
PS. I have added a new header pic and I added my Great Strides Video above the posts, so noone will miss it;-)

VX-809 Promising Results in Phase 2a Clinical Trials

I LOVE seeing good news about CF!! Today it has been posted all over facebook, email, other blogs, and news, that the VX-809 phase 2a clinical trials look very promising!! Click here to read about it on the CFF website.

Here is the email from Bob Beall:

Dear Friend,
This week, we gained important new ground in our work to advance the development of new cystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial. VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508. (This is what Lil' Chris has)

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.

VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.

Without your support, this milestone would simply not be possible. Your contributions help us build hope for the future and continue to advance vital cystic fibrosis research.

Thank you for your commitment to the fight against CF. Together, we are making a difference!

Sincerely,
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Click here if you want to see my first post about VX-809. I think I put in this post that the VX-809 was a pill, but I'm pretty sure it is inhaled 3 or 4 times a day. The VX-770 is a pill.

They are going to do another clinical trial in the second half of 2010 and that will be combining the VX-809 and the VX-770 in patients with Delta F508 (Lil' Chris' genes) I believe. Keep praying that this is the CURE!! Keep fundraising or donating, b/c these clinical trials are not cheap!! The Cystic Fibrosis Foundation needs our help to keep the research going to get to a CURE that is so close right now!! Click this link to donate today...http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6765&idUser=244059

Thank you all so much for all the money you have donated over the past 2 years!! As you can see, your money is being put to good use...we are getting closer and closer to a CURE!!!
Thanks again,
M

First Ever Great Strides Video!!

I finally made a Great Strides video for Lil' Chris!! Every year, I have seen everyone else make one, but I never did. I don't know if it was b/c I just never had the time, or if I just didn't want to type what I would have to type on the video. It makes me sick knowing that all us CF families not only have to deal with the stress of CF, but also have to raise the money to fund VITAL research to find a CURE and get better meds! Cystic Fibrosis is NOT governmentally funded like other diseases. It's up to US to make the difference in these children's lives! It's up to US to help them live a "normal" life! It's up to US to help them live longer!

Now do you understand why I do all my fundraising and always ask for your help in donating? We CAN make a difference!! We CAN help these kids live longer!! We CAN make CF stand for Cure Found!!

Please help by clicking here or by clicking on the Great Strides link on the upper right hand side of my blog, to donate today. Every penny counts! Thank you so much for all of your support over the last couple of years:)

Without further ado, here is my first Great Strides video...

Make an on-line slide show at www.OneTrueMedia.com

Thank you SOOOOOO much for watching and for donating! Please spread the word!
Thanks,
M

Fundraiser's Results & Upcoming Fundraiser's

This past week of fundraisers has been a lot of fun!!

I owe a BIG THANK YOU to:

Heather V.-2 CF children

Tina C.-1 CF child

Adam L.-1 CF child

Thank you guys soooooo much for spreading the word about my Friendly's fundraiser that was in your town. I would have done one in my town, but we don't have a Friendly's in my town anymore, and I like to try new fundraisers:) It was so nice meeting everyone's family:) I think it's great how they all came out and supported CF!

So, this is how it breaks down for my latest fundraisers:

CiCi's Pizza in Wooster:

1. $75 in tips, donations, and raffle for a basket of Bath and Body Works products(Thanks again Stacy A. and Amy;) BTW, Stacy A. was the one who won the raffle! She told me to keep the raffle prize and use it again next time. Isn't she the sweetest girl EVER!!! Oh yeah, we also had a super nice customer that said she didn't have any money on her, but that she would run to the ATM and come back...well, surprisingly she did!! She made it back right at 8:00pm when we were finishing up! Now how sweet is that?! A complete stranger! Wow, some people amaze me in their generosity!!


2. $25 in the 10% from the receipts...this is a total guess, since it takes a couple of weeks to get the check, but since it was so slow b/c of the snow, I think it is only going to be around $25.


3. $500 from Kohl's since I made the fundraiser an A-Team event. Thanks again Aileen, Stacy A., Stacie M., and Barb!!! You guys ROCK!!!


4. That makes the total $600!!! Not bad. If it wasn't for Kohl's, it would have only been $100.

Friendly's in Canton by the Belden Village Mall:

1. $210 in donations and for the raffle, which was a signed OSU basketball by the coach Thad Matta, an OSU t-shirt, OSU visor, and OSU flip-flops. I owe a BIG THANK YOU to HELEN from Kohl's who donated the autographed basketball. Thank you so much Helen!!! I was shocked as to how much I raised from the raffle!!


2. $130 in the percentage from the receipts. This again is a guess, but the manager did tell me that they did around $1200 that night, and since we get 10% for the first $1000 and then 15% for any over that, if I added correctly it should come to around $130. I'll let you know when I find out the true numbers for both events.


3. That makes the total $340!!! I wish I could have made it an A-Team event from Kohl's, but there was nothing for them to do. They (or maybe it's just this manager) had more rules than CiCi's. I couldn't buss tables for tips, or put my CF Facts papers on the tables, I couldn't walk around to the tables and tell them about CF or the raffle, and I couldn't even hand them papers about CF when they first walked in!! She said that they could pick up the paper if they wanted them. I handed them papers when they first came in anyways;-) LOL! The manager saw me, but didn't say anything. I think she knew I was a little upset about not being about to at least put my papers on the tables. I had told her that I do that at my other fundraisers. I think we still had a GREAT night!! It was even snowing that day and was bitter cold! The news said that it got down to -1 in Wooster that night! YIKES!! I was so happy for all the people that came out and supported CF even in the snow and cold! THANK YOU EVERYONE WHO DONATED!! For the raffle tickets, I sold them at $2=1 ticket, $5=4 tickets, and $10=10 tickets. I was surprised as to how many people bought the 10 tickets!! The winner of the raffle bought $30 worth and he was there b/c of Heather spreading the word, so again THANK YOU HEATHER!! I think he said that his wife works with Heather's sister. Luckily Heather's sister was still there and I was able to give it to her to give to Justin's wife to give to him:) It all worked out beautifully:) He was the one who gave the most money, so I was glad when the lil' girl pulled his name:)

Jeans 4 Genes

1. At Kohl's, my super nice boss let us do Jeans 4 Genes from October to January! Associates paid $3 to wear jeans or $2 to wear sneakers(tennis shoes as they call them around here;) or $5 for both. They got to do this on EVERY Monday, Tuesday, or Thursday for those months. Don't I have the BEST boss and the BEST associates!! I love my job!


2. Last I checked, we were up to $600!!! I'll find out the true total when I go back to work on Monday. I'll let you know.
   

All those fundraisers combined equals $1540!! YEA!!

Here is a list of my next fundraisers:

1. Tumbleweed-Tues Feb 9th all day, but must have coupon


2. CiCi's Pizza-Thurs Feb 25th 4pm-8pm


3. Tumbleweed-Tues March 9th all day, but must have coupon


4. CiCi's Pizza-Thurs March 25th 4pm-8pm


5. CiCi's Pizza-Thurs April 22nd 4pm-8pm


6. CiCi's Pizza-Thurs May 27th 4pm-8pm

I wouldn't mind doing another Friendly's one. I'll have to give them a call to set up another one. I have a number to try to get a golf fundraiser going, but I don't know much about golf, nor do I know anyone who plays golf. At our last Great Strides meeting, we talked about doing a spaghetti dinner to raise money. That might be fun:) If anybody has any other great ideas, please let me know:)

All in all it was a GREAT FUNdraiser week;) It wasn't much of a vacation for me though;) I was on vacation from Tues til Sun, but with getting ready for the fundraisers and doing them, it felt like I was working more than maxin and relaxin;-) LOL! I always get super stressed out for my first one, not nerves, just stressed making sure I have all my signs and stuff ready. Oh well, it was worth it for my Lil' Chris and for Jack & Allie, Nick, Kendall, and ALL CFer's!!!!

Which reminds me...please pray for Adam's 8 month old daughter with CF, Kendall. She had a fever of 104 the other day and hasn't been feeling well. Please lift her up in prayer.

I think that's everything for now, I'll let you know if I add any more fundraisers;)

M

Ayla's 1st Birthday! HAPPY BIRTHDAY, AYLA!!

I can't believe 1 year ago today, my sweet baby girl was born;) Boy did time fly by!! She was born on January 29th, 2009 at 2:52pm and was 7 lbs. 14 oz. and 19.5 inches long. I remember going into labor, like it was yesterday!(click on "January" below to read about it) She has been such a joy to have around. I love seeing her beautiful smile every day:) Yes, even at 6:30 in the morning;) lol!! Today she slept til 7:15am and woke up laughing;-) She is just too cute;) She must have known it was her birthday;)

Here is a montage from 1 year ago today until today:) The pics above were taken at Picture People, since Kiddie Kandids closed;( I think they did a GREAT job though! They even had us sign a paper so she could be one of their models...I guess to put up on their walls, though it would be cool if she shows up on one of their brochures or something;-)

Make an on-line slideshow at www.OneTrueMedia.com

Here are some things she has been up to:

1. She started to get her 5th tooth in the beginning of January, but now her 6th and 7th teeth are coming through too!! She has 4 right now, 2 on the top and 2 on the bottom, and now has one coming through on the bottom right and left side of her 2 bottom teeth and one coming through next to her upper left front tooth! She has another one that may start to come through soon too:)

2. She has been standing up at the couch and has been cruising around them for awhile. She can pull herself up to stand pretty much anywhere, as long as she has something to hold onto.

3. She drinks just whole milk now. She started refusing her formula a month ago.

4. She eats only table food. Thank God, no baby food for her! Saves us some money:) YEA!!

5. She drinks out of her cups now instead of bottles...PTL!! NO MORE BOTTLES!! YEA!!

6. She can wave, clap, make kissing sounds like "mwaaaa", make clicking sounds with her tongue, and give big wet kisses, and say "uh oh", "momma", "dadda", "night night", put a cell phone to her ear and says "hello", and "cheese" when you try to take her pic:) They are all so cute!

7. She likes to babble and make lots of noise. Sometimes she sings and dances to some of the songs on the shows she watches;)

8. She usually wakes up sometime between 6:30am and 8am, and goes to bed usually between 6pm and 7pm.

9. She usually only takes about 2 naps now, and still puts her right pointer finger in her mouth and plays with her hair with her left hand when she gets tired;-)

10. She still has yet to say no(shake her head no) to ANY food I have given her!! She eats EVERYTHING!! I LOVE it!! When she is done though, she'll definitely let you know!! She either won't let you come near her mouth, or she'll pull the last bite out of her mouth. Lil' Chris used to just spit it out onto his bib:)

11. She'll pretty much copy anything you do, like making faces or noises or hand motions or even coughing;)

12. A few weeks ago she started putting her arms up when she wanted you to pick her up:)

13. She still has NO interest in walking yet!

If you would like to take a look back to my posts when she was first born, click on the months below(remember, they go backwards by date)...

1. January posts - Going into labor posts and Ayla's birth pics:)

2. February posts - The posts before we found out if she had CF or not, and more pics:) BTW, she does not, PTL!!!

3. All Ayla posts - This is every post I ever mentioned Ayla. I found them by putting her name in the section on the right hand side of my blog called "Search My Blog for Anything." This is a great tool, and I encourage you all to use it if there is something you are looking to learn about:) It shows 4 posts at a time. Just click on the title to read them and then hit your back button to click the next one. Click the numbers at the bottom of the fourth post to see more.

HAPPY 1st BIRTHDAY, AYLA!!

WE LOVE YOU!

Love,

Momma, Dadda, & Lil' Chris

I hope you enjoyed a years worth of Ayla pics and posts;-)

M

PS. I'll post all about my fundraiser sometime this weekend:)

Nasal Polyps

Here is a great explanation of Nasal Polyps. I always wondered the whole story behind them. I always heard that a lot of CFer's get them. This may come in handy IF Lil' Chris ever gets them. I pray that he doesn't!!

I hope this helps you too and clears up any questions you might have had about them:)
M

CiCi's Fundraiser Went Great!!

Photo and video editing at www.OneTrueMedia.com

We had our first fundraiser of the year and it went great!! We had a lot of fun and raised some money for Cystic Fibrosis and got some awareness out to the public. Awareness is a big reason why I do these fundraisers. The more people who know about CF, the more money can be raised, and the closer we get to a CURE!!!

We raised about $600 thanks to my wonderful Kohl's team:)

Big THANK YOU to:

Aileen

Stacy A.

Barb

Stacy M.

Also a HUGE THANK YOU to Stacy A. for spreading the word about CF and the fundraiser and for her friend Amy who donated all the raffle prizes for the next 4 fundraisers!! THANK YOU, THANK YOU, THANK YOU!!

While we were at CiCi's doing the fundraiser, I talked to the manager about doing some more. So I set up some more dates....the last Thursday of Feb, March, April, and May. He said Thursday's are busier. Tonight(Tues) was slower than the times we did them last year, but it was very cold, windy, and snowy outside:( Hopefully Thursday nights will be better for us.

We had a Great Strides meeting before the fundraiser to go over some things for our walk coming up on May 1st. Thanks Erica and Mary for coming so we could plan for our big day in May:) I was happy to let them know that I raised $600 at Kohl's doing Jeans 4 Genes Days! Thank You To All My Wonderful, Generous Kohl's Associates!!!!! I also got Panera Bread to donate 100 bagels for our walk:) YEA!!!! The only other thing that I have done for the walk so far, is to get 2 radio stations announce it on-air closer to the walk date:) 94.1 and 104.5. Oh yeah, I also got our local TV company(Clear Picture) to put all my fundraisers and the walk on Channel 10 Community Notes:) I told them that I am planning on making another commercial for our CF walk too. It was a lot of work last year, so I better get started;0

Our next fundraiser is on Thursday 1/28 at Friendly's in Canton by the Belden Village Mall from 5pm-8pm. I can't wait, b/c this is my first time doing one at Friendly's:) I hope it goes well. If it does, then I might set up some more;) I'll let you know how it goes. Please keep spreading the word, b/c the more people, the more donations. Friendly's will donate 10% of EVERYONE'S bill from 5pm-8pm, and if we bring in over $1,000 in business(which the manager said isn't very hard), then they will donate 15% for every bill over that first $1,000!! YEA!!

M