RED for Conner and Eva!!!

This was earlier today at Wendy's when we met Daddy for lunch:) Lil' Chris kept wanting to give Daddy some lovin:) Aren't they so cute?? He is saying "Awww" :)

Tomorrow is the BIG day!! Our 2nd walk for a CURE for CYSTIC FIBROSIS in Wooster, but our first OFFICIAL walk in Wooster. Last year was considered a practice run, I guess. But this year we are on the books and on the pamphlets!!! YEA!!!

It's been a lot of work, but it will all be worth it tomorrow when we hear how much we have all raised for a CURE for CYSTIC FIBROSIS!!!

THANK YOU AGAIN EVERYONE WHO HAS DONATED!! WE CAN'T PUT INTO WORDS HOW MUCH IT MEANS TO US AND TO ALL FAMILIES AFFECTED BY CYSTIC FIBROSIS. WE ALL THANK YOU FROM THE BOTTOM OF OUR HEARTS!!

If you haven't donated, but would like to still, it's not too late:) Click here to donate today and help make a difference in 30,000 children's and young adults lives.

Tomorrow for our walk, the theme is RED for Conner and Eva!! I've told some of those who are coming to wear something red. I also bought red ribbon that we can tie around our wrist, and I'm going to try to get red balloon's. I think the place opens after our walk is started though. I also told Pat Catan's to try to do a red craft. The kids will be making key chains. He will have lots of red beads if they want to do red:) Also, I asked Erica(our director) to bring crayons and red paper so that we all could make cards for Conner. I'm going to put together a box for him and send it. So if you have something you would like to include, please let me know.

Conner is a 7 year old little boy who has CF and Prune Belly Syndrome. He is the only one to ever be diagnosed both of these. He hasn't been doing so well lately and has had to rely mostly on oxygen. So hopefully these cards will make him feel better. Red is his favorite color and he always wanted to be a Fire Fighter when he grew up:) The doctors unfortunately said he only has a couple of more months left;-(

Eva was a 26 year old CFer who recently passed on to be with the Lord. She was well know by the CF world. She even made a CF movie in Canada. I hope someday to see it:) Her favorite color was red as well:)

Please keep Conner and Eva's family in your prayers.

Thank you all and I can't wait to see some of you tomorrow...rain or shine(hopefully not rain:)

M

PS. Please pray for Lil' Chris. He has been coughing the last couple of days. He is getting over a cold, so hopefully it's nothing more.

2 Days Left!! / What Lil' Chris is doing for a CURE:)

Only 2 days left until our walk for a CURE for Cystic Fibrosis!!

I just wanted to thank EVERYONE who has donated so far and who has gotten sponsors!! Your generosity amazes me each year! We can't thank you all enough for all that you have done for "A Cure 4 Lil' Chris" and for all 30,000 children and young adults who suffer daily from this horrible disease.

THANK YOU, THANK YOU, THANK YOU!!!

If you haven't donated yet and would like to, click this link..http://www.cff.org/Great_Strides/LilChrisChris6765

Here is what Lil' Chris is doing for a CURE...

"Driving for a CURE" :)

"Running for a CURE" :)

"Riding for a CURE" :)

CF Commercial / Cross-contamination / Some Awesome People:)

Here is our commercial for our Great Strides Walk for a Cure for Cystic Fibrosis for this Saturday, May 1st. My hubby and I put it together. Big THANKS to Logan and Daniel for their pics of them doing nebs and Vest treatments!! I wanted a pic of nebs, b/c Lil' Chris doesn't do any, but it is a HUGE part of the everyday life of a CFer and I wanted to display that. So THANK YOU LIL' FELLOW CFers!!!

Make video montages at www.OneTrueMedia.com

Daniel will be at the walk, along with Jack who is another lil' local CFer. Lil' Chris won't be there though:( I just can't bring myself to take him. There is such a thing as Cross-contamination. CFers carry different bacterias in their lungs and they can pass those bacterias onto other CFers. It doesn't affect non-CFers, but it could affect other CFers and others who may have any other type of lung diseases. I know we would all do our best to keep them apart, but Lil' Chris has been doing sooooo well and we just don't want to take any risks. Plus, I remember reading this comment on Mugga Bugga's blog from an adult CFer last year and since then, I REALLY don't want to take ANY risks...

Natalia Ritchie said...
My school of thought is CF people should always be separated from each other. Always. That's how my mom and dad did things when I was little, and I later on when I was a teenager and adult. I have seen too many c negative people become positive as a result of being in the same social circle. My docs always tell me to remember that cepacia can be in your body undetected for 2 years. Meaning just because someone is negative does not mean it is safe. This is what happened last year at my clinic, a group of kids were hanging out. All negative. There was this idea that this was safe. Within 9 months, 5 contracted cepacia, and now 3 of those 5 are no longer with us. I never understood why take those risks? The more doctors I talk about this with, the more tell me to do whatever it takes to keep myself cepacia free. I was even told by one of the leading infection control doctor in NY that we still don't know exactly how certain strains are contracted. She told me, if she was a CF patient, she would never be in the same vicinity as another CF patient, except when without choice such as clinic and hospital. I think it's a scary reality, but I think it's good practice. When people acuse me of being rude or not being apart of the CF community, I just don't care. This is my life. And certainly I don't want to infect and harm someone else with my strains or infection.I know it seems harsh, but I have seen such tragedy as a result of cepacia. xoxo

Now you probably see why I don't take Lil' Chris to our walks. I hate it though. I wish I could take him and not have to worry, but it is better to be safe than sorry. We'll see when he gets older and actually understands that we do all this for him and he knows to stay away from other CFers. The other day when we went to go get our pic taken for the local newspaper, Lil' Chris had to sit in the car for 1/2 an hour(the guy was late) b/c Daniel was out running around. Nothing against Daniel or anything, I am just very leery about having them so close. I almost didn't even want to roll down the windows!! I'm so bad. lol I just can't help it! I want to keep him as healthy as possible and Daniel too! Lil' Chris cultured something weird last time and Daniel doesn't need any new bacteria's in his lungs. I'm happy to report that Lil' Chris, Jack, and Daniel all had a GREAT year!! I just want to keep it that way:)

Our walk is THIS Saturday!! I can't believe how it snuck up on me!! If you haven't already sponsored me, please click here to see Lil' Chris' CF video and to make a quick on-line donation today:) Thank you to those who have already sponsored me:) It's greatly appreciated!! BIG THANK YOU to Amy K. at work who sent an email to her friends and family to get donations and has raised almost $100! And a BIG THANK YOU to Kevin and his mom Deb(our old babysitter;) for going around and getting donations and sponsors from their work and friends and family!! YOU GUYS ROCK!!! They have raised $315 so far and will probably have between $400 and $500 soon!! I'm sure you all agree with me when I say they TOTALLY ROCK!!! Thanks Kevin and Deb and all your donors:) You are all AWESOME!! The kids miss you Deb and so do we;-(

The coolest thing just happened!! I got an email from a complete stranger that saw our commercial on TV and found my blog by googling the walk!! Isn't that awesome?! Her name is Mallory and she will be coming to the walk this Saturday!! YEA!! She told me that she has a friend that lives in California that has Cystic Fibrosis, so she wanted to do anything to help out. Isn't that soooo nice?! I can't wait to meet her and her husband this Saturday:) She's going to try to get her friend to come to our walk next year:) That would be awesome! See you Saturday Mallory:)

M

PS. If you live in town, check the Daily Record today. There is a picture of us 3 local CF moms and an article about our walk:)

Cool Invention for Nebs:)

Isn't this strap awesome?? Mommy and Daddy don't have to hold it up and neither does the child!! It looks so much easier than the other ones I have seen. Lil' Chris doesn't do any nebs, but if he did.....I would soooooo be ordering one of these:) Click here to read what Ronnie had to say about it. If you would like to order one, you can email Rachel at meltnaz@gmail.com. They are only $19.50 plus shipping. What a cool invention:)

M

Another Successful CF Fundraiser!!! YEA!!!

Don't you just love our new Kohl's A-Team shirts??? :) It actually says "Volunteer" on there now:)

We had an AWESOME CF fundraiser tonight at CiCi's Pizza!!!! We raised $175 in tips, donations, and raffle!!! That's the most out of the last 4 CiCi's fundraisers that I have done!!! And guess what????? IT DIDN'T SNOW THIS TIME!!! WOO HOO!!! This was my 7th fundraiser since January, and it has snowed EVERY time, except for one at Tumbleweed!!!

Needless to say...we had a GREAT night and raised a lot of money to help find better meds for Cystic Fibrosis and hopefully a CURE SOON!!!

I won't know how much we raised in the 10% from everyone's receipts for another week or so, but we DID have 5 Kohl's associates help out, so that means another $500 grant!!! YEA!! So that's $675 and maybe another $75 in receipts, so maybe a total of $750!!! WOO HOO!!! Gotta love CiCi's and Kohl's:)

Many, many, many thanks to my fellow Kohl's associates who gave up a night to come help raise money for CF!!!

BIG Thank You to:

Rebecca

Kathleen

Sharon
Jean

Also, thank you to Beth Z. for stopping by after work and helping out for the last hour since it was so busy!!! You rock girl:)

And THANK YOU to Alma (fellow CF mom)for stopping by and for helping me spread the word earlier on Facebook and for getting her friends to come too:)

Also, a BIG THANK YOU to my wonderful neighbor's that I met the other day:) It was so nice of you guys to come and support Lil' Chris, thank you:)

I'm going to have another fundraiser at CiCi's on May 27th from 4pm-8pm...I hope it's as great as it was tonight:)

M

PS. Thank you to Spencer and my hubby too....I guess...LOL :) Here is why I say that...

Here are the dirty tables that need cleaned off....

And here is my hubby and his friend Spencer.....LOL

Need I say more??? LOL

Tonight's Fundraiser is Dedicated to Conner!!

I'm dedicating tonight's CF fundraiser at CiCi's Pizza to Conner. He is a very brave lil' CFer who the dr's say only has months left to live. The disease has taken over his lil' lungs. Check out his video below, but don't forget a tissue...

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

Join us tonight between 4pm and 8pm at the Wooster CiCi's Pizza for Conner!! I bought red ribbon the other day so we can honor him at our walk next weekend, but I'm not sure where my hubby put it. Hopefully I can find it and then wear it tonight for the fundraiser:)

"Praying for you Conner man!!!"
M

CiCi's Pizza Fundraiser TONIGHT 4pm to 8pm in Wooster!!

Today's the day!!! Join us tonight at CiCi's Pizza in Wooster between 4pm and 8pm!!

Not sure what to make for dinner or don't have enough time to make anything....well come on down and join us at CiCi's and have some GREAT food for a GREAT cause!!!

There will be a raffle for a basket of Bath & Body Works products, and for the first time...I will be selling Cystic Fibrosis bracelets!! (Thanks Oma;) There are 2 different kinds...one says "Great Strides" and the other says "Breathe" and there are adult sizes and kid sizes. They both say "www.cff.org" on one side. Here are some pics of them...

Hope to see you tonight!! Please spread the word:)

M
PS. Unfortunately Lil' Chris woke up with a runny nose today;-(

New Vest Questions / Update / Upcoming Fundraisers

I've been getting lots of questions about the new Vest, so I thought I would post the answers in case anyone else was wondering too:)....

To answer CF Momma's question about the new Vest having the air holes like his old Vest that blow out cold air:

No, it doesn't blow out the cold air, b/c it doesn't have those little air holes. We were told when he first got his, that only the little ones have the air holes. I forget why, something about the kids being so little. Maybe it's not as hard on them or something. I can't believe what a difference it makes in the noise though! I guess I just never realized that most of the noise was coming from the air blowing out of those little air holes! I just thought it was the machine I guess! I used to have to turn up the TV real loud so he could hear it, but not anymore:) YEA!!

Another question I had was if it was "harder" on him. It might be a little bit, but he doesn't seem to mind. Plus, it's probably better for him if it is harder!

Is this Vest for all ages?? Yes, I believe it is, except for the little kiddos. It starts in a size Medium. It comes in blue, pink, and black. We opted for the blue one since he is a boy and his old one was black:) *****UPDATE: YES THEY DO HAVE THE CHILD SIZE, IF YOU ALREADY HAVE A VEST, JUST CALL THE COMPANY AND ORDER THE NEW ONE AND THEY WILL SEND IT OUT TO YOU...THANKS CF MAMMA FOR CORRECTING ME;)*****

Only one of the hoses has popped of once that I know of. My hubby has been doing most of the treatments, b/c I was sick. They haven't popped off at all for me yet...other than in the video on the last post;-) lol

As for a little update, my cold is mostly gone, but my voice still sounds weird;( Ayla's nose started running yesterday:( and Lil' Chris and big Chris have been doing fine so far!! Please pray that Lil' Chris doesn't get sick. I wore my mask the whole time I was sick last week, so I'm not sure how Ayla even got sick! Stinks! We've been playing the game "Keep the Kids Apart." Oh what a fun game...yeah right! It's so hard!! They are used to playing together and it breaks my heart to have to tell Lil' Chris "Sorry buddy, but Ayla is sick. So you have to stay in this room while Ayla plays in the other room, so that YOU don't get sick too." He's usually ok with it when I explain it to him, but still......I just hate the fact that I HAVE to do it and that I HAVE to sanitize my hands between touching each kid. I'm sure every household goes through this to some extent. We just have to be extra careful, that's all. He's been doing so great, we just want to keep it that way:)

At 1:00pm today, me and 2 other local CF moms are getting together to get our picture taken at our walk site for the local newspaper. They did this last year too and it was a great article that they did. I'm sure it's going to be just as great this year too:)

This Thursday is my next CiCi's fundraiser for Cystic Fibrosis. If you're in town, come and enjoy some great pizza for a GREAT cause this Thurs at the Wooster CiCi's between 4pm and 8pm:) A percentage of each bill will go towards a cure for CF if they put their receipt in the jar by the register. We will have a raffle, and for the first time, I will be selling CF bracelets too, thanks to my Mother-in-law for getting them and sending them to me:)
So far, I have 4 Kohl's associates signed up for this event, so I just need one more and then we will get a $500 grant from Kohl's:) YEA!! We haven't missed an event yet, and I only have 3 more set up...

1. Thurs 4/22 at CiCi's in Wooster from 4-8pm
2. Saturday 5/1 at Hewitt Cowles Pavilion for our walk. Check-in is at 9am and the walk begins at 10am. There are a BUNCH of Kohl's associates signed up for this one:) Thanks everyone:)
3. Thurs 5/27 at CiCi's in Wooster from 4-8pm

I'm also having a fundraiser at Applebee's in Wooster on Wednesday May 12th between 4pm-9pm. You have to have the flyer though. I'll be posting the flyer closer to the date:) This one won't be a Kohl's A-Team event though. There is just nothing for the people to do. I don't think they let us walk around to each table and have raffles, so I may not even be there the whole time. I may just go for dinner with the family when my hubby gets done work. IDK, we'll see:)

I think after all these fundraisers I may take a break for a while. I've been doing 1, sometimes 2, EACH month since January. I'm beat!!! Not to mention all the planning for the walk. Maybe I'll do more fundraisers in the Fall:)

I hope to see you Thurs!!

M

PS. Some great things going on in our neighborhood...I'll share soon:)