CF Fundraiser Tonight at CiCi's Pizza 5p-8p!!!

Last years "A Cure 4 Lil' Chris" team...Thank You Everyone who attended and showed your support for Lil' Chris!!!

Join us tonight at Wooster's CiCi's Pizza between 5-8pm for "A Cure 4 Lil' Chris" and ALL who suffer from Cystic Fibrosis!!

A percentage of your receipt will go towards a CURE for Cystic Fibrosis and there will be a raffle for a FREE Applebee's dinner and a movie for 2:)

Save the following dates for my upcoming Wooster CiCi's Fundraisers for Cystic Fibrosis:

April 21st 5-8p

May 5th 5-8p

May 26th 5-8p

As always, you will see 5 Kohl's associates volunteering their time to help find "A Cure 4 Lil' Chris" and help us get a grant of $500 each event for the Cystic Fibrosis Foundation:)

Special thank you to tonight's Kohl's volunteers:

Me:)

Stacie M

Melissa M

Jill

Kaitlyn G

Special thanks to Barb and Helen to offer to come if one of the girls can't make it:) You guys ROCK!!! Thank You So Much Girls!! It means the world to not only us, but ALL CFers!!!

If you can't make our fundraiser tonight but would like to donate, click here to make an online donation for

"A CURE 4 Lil' Chris!"

See you tonight at 5pm:)

M

Test Results / Cure to the Common Cold???

Here are the results from Lil' Chris' chest x-ray, blood work, and throat culture from last month and what the dr said about them...

-Chest x-ray came back normal. YEA!!! :)

- vitamin D level is normal- "this is great and hard to do in the winter" the dr. said :) I guess the Coromega Omega3+Vitamin D and the gummy Vitamin D's I have been giving him this winter really helped!! We are going to continue to give the kids these year round since the whole house went ALL WINTER WITH NO COLDS!!! Can you believe it??? This was a first!! My husband and I had a sore throat at one point, and I remember feeling sick one day, but completely fine the next, so I guess it was just allergies, but THAT WAS IT!! Have we found the CURE to the COMMON COLD??? My Dad was the one who told me about Vitamin D and I guess he was right!! Maybe it IS the cure to the common cold!!! "THANKS SO MUCH DAD!!! It's soooo important to keep Lil' Chris as healthy as possible and your knowledge on Vitamins has helped him soooo much over the last 3 1/2 years of his life!! Between all the Vitamins you gave me to take when I was pregnant with him, and all the Vitamins you suggest he take like the Omega 3 and Vitamin D and Vitamin C's, AND with the AWESOME air purifier you gave us, and your knowledge on how important exercise is to the lungs, and not to mention your awesome donations to the CFF....I honestly believe you have single handily helped save and extended my son's life!!! I will never be able to repay you!! All this combined is the greatest gift you could ever give me....a "healthy" Cystic Fibrosis son!! I LOVE YOU, DADDY!! YOU ARE THE BEST DAD IN THE WHOLE WIDE WORLD!!!!!"

- allergy testing: "Looking at his results, the only thing that probably causes a problem, or is high enough to consider abnormal, is cats or cat dander. I would still avoid broccoli (that lab is a special send-out) since after you have a reaction, the next reaction can be more severe."

- GGT- "this is a test of liver health, as are some other tests that were sent (AST, ALT). His GGT is mildly elevated(his GGT=50 and standard range is between 3 - 22), and something we will likely keep an eye on over time, but nothing to act upon right now." ;-( I'll definitely be asking about this at our annual visit!

-Throat culture- sensitive staph aureus like the last few times. YEA!! No big bad bacteria!!! Thank you Lord, b/c Nathan, my nephew, is coming in a couple of weeks and if Lil' Chris had a bad bacteria, then they wouldn't be able to be around each other since Nathan has Leukemia.

We will go over everything in detail at his annual visit next month, so I'll let you know more then. As for an update on Lil' Chris...he continues to do GREAT!!! He amazes me everyday when I look at him and think about how much worse it could be right now. I'm praying, praying, praying that a CURE will be found before he gets worse!! The donations have been rolling in, so that gives me HOPE:) Thank you to all who have donated so far!! It literally means the world to our family!! If you haven't donated yet, but would like to, click here to make a difference today!!

Thank you for all your prayers and keep them coming!! :)

M

CiCi's Pizza CF Fundraiser Results

The CiCi's Pizza fundraiser for Cystic Fibrosis the other night went GREAT!! It was a slow night, but it was still fun hanging out with my 4 other Kohl's associates:) Afterwards, I realized that I totally forgot to take some pictures;( Next time I try to remember so I can post them on here;)



We raised about $100 in the raffle for a free 1 hour massage at Tips, Toes, & Beyond, not bad for a slow night. Not sure how much in the 10% from the receipts yet, maybe $60??? Best of all....thanks to my awesome co-workers....we will be getting a $500 grant from Kohl's!!!! Isn't Kohl's the BEST!!!! So that makes the total around $660!! Woot Woot!!



I'm so proud to work for a company that gives millions away to tons of great causes!! Cystic Fibrosis was in the top 10 or top 5 last year for getting the most grants from Kohl's, I believe!! That's AWESOME!!! My store recently switched districts and I was so proud to see that some of the stores in this district are already signed up to do some events for Cystic Fibrosis!!! I'm going to try to get a few Kohl's stores to come to our walk, although we are kinda far for most of them though. If I can get 3 other Kohl's stores to bring 5 associates each to our walk, then Kohl's will give us a grant of $2,000!!!! Woo Hoo!!

So again, thank you to my AIA girls for helping out at CiCi's the other night....You girls ROCK!!

Barb N

Kayla

Rebecca G

Melissa M

My next CF fundraiser is on Monday, April 4th between 5-8p at the Wooster CiCi's Pizza!! Save the date and spread the word!! I hope to see you there:)

M

PS. Lil' Chris has been doing GREAT!!! I will post about his results from the CF clinic visit the other day as soon as I get the throat culture result back. I got all the other results back, but am waiting for this last one....the dreaded one:( Please pray that there is no BAD bacteria in his lungs!!!

CF Fundraiser Tonight at CiCi's Pizza 5-8p!!!

Last years "A Cure 4 Lil' Chris" team...Thank You Everyone who attended and showed your support for Lil' Chris!!!

Join us tonight at Wooster's CiCi's Pizza between 5-8pm for "A Cure 4 Lil' Chris" and ALL who suffer from Cystic Fibrosis!!

A percentage of your receipt will go towards a CURE for Cystic Fibrosis and there will be a raffle for a FREE 1 hour massage at Tips, Toes, & Beyond!!

Save the following dates for my upcoming Wooster CiCi's Fundraisers for Cystic Fibrosis:

April 4th 5-8p

April 21st 5-8p

May 5th 5-8p

May 26th 5-8p

As always, you will see 5 Kohl's associates volunteering their time to help find "A Cure 4 Lil' Chris" and help us get a grant of $500 each event for the Cystic Fibrosis Foundation:)

Special thank you to tonight's Kohl's volunteers:

Me:)

Barb

Kayla

Melissa M

Rebecca G

Thank You So Much Girls!! It means the world to not only us, but ALL CFers!!!

If you can't make our fundraiser tonight but would like to donate, click here to make an online donation for

"A CURE 4 Lil' Chris!"

See you tonight at 5pm:)

M

CF Clinic Visit 3/16/11

Lil' Chris had his 3 month check up today. He did a GREAT job!! I can't believe how big he is getting!! He laid down on the table to get his throat culture and I just had to take a pic b/c he looked sooooo big!!! I remember when he was just a little baby laying on that table. It's crazy to think we've been there probably about 20 times already and he's only 3!! We go back again for his annual visit on May 18th at 9am. That's going to be a loooong day!! That's when we see all the dr's and nurses and social worker and physical therapist and food therapist and everyone.

Overall, he had a GREAT visit! The dr said his lungs sound really good and she was surprised that he is very healthy! Our regular dr wasn't there, so we had a young dr we never met before. I told her about how he got a rash on his body for like 3 days after eating fettuccine alfredo with broccoli, so she ordered a blood test to see if he is allergic to broccoli and suggested we see an allergist. I told her that I was going to try it one more time to see if that was it, but she said not to b/c he could have a worse reaction like his lips swelling or wheezing. She also suggested Albuterol to have just in case he ever wheezes or gets short of breath and b/c he has been coughing in bed the last 2 nights and his nose has been stuffy at night too. She suggests we do 2 puffs before Vest time in the morning and 2 at night too. Chris and I don't think that he needs it and that it's probably just allergies b/c our allergies have started too. So we are just going to keep the Albuterol on hand just in case he ever gets short of breath or starts wheezing. It's never happened before, so I'm hoping and praying we never have to use it. I'm sad in a way that he has it, but glad that we have something on hand for just in case purposes.

His weight was 37 lbs and 3 oz (71st percentile) and 3 months ago it was 36 lbs and 2 oz. His height was 40 inches and 3/4 (76th percentile) and last time it was 40 inches. His BMI was 50 and last time it was 55, but they usually don't worry unless it goes below 50. So his numbers were all pretty good, Praise the Lord!!

After our visit, we waited 1 hour to get his blood work done, then we had to wait again to get his chest x-rays for his annual visit in May. They like these to be done before the annual visit so that they can go over the results with us on the actual annual visit. He did a great job getting the needle or "shot" as he calls it;) No tears, just a little whimper. He did a GREAT JOB getting his chest x-rays!! No tears at all and he laid really still and did exactly as the lady told him!! He got one laying on his back and another on his left side. I went in with him this time, so I got some pics;-) LOL! The last time I went in with him was when I was pregnant with Ayla and didn't know it. Poor Ayla;(

After that, we went to Chuck E Cheese for lunch and some fun:) Then we came home and had some fun on the scooters and motorcycle:) They had a blast!! It was the first time Ayla got to ride her new scooter that she got for Christmas! She did a Great job pushing on the gas pedal, but....steering....that will need some work;-) LOL

Make photo slide shows at www.OneTrueMedia.com

Thank you so much everyone for your continued prayers!! They are definitely working!!
M

Don't forget...CF Fundraiser this Monday at Wooster's CiCi's Pizza between 5-8pm!! There will be a raffle for a FREE 1 hour massage!!

2011 Great Strides Commercial!!!!

Here it is!!! Our 2011 Great Strides commercial that will be playing in all of Wooster and Massillon Ohio!!! YEA for Cystic Fibrosis Awareness!!! Huge Thank You to all who are apart of this commercial and who walked with us last year:) Hope to see you again this year on May 14th at 9am at the Hewitt Cowles Pavilion by Ida Sue School!!! There will be bagels from Panera Bread, pizza from Domino's, chips from Frito Lays, and water from Culligan's. There will also be a craft table for kids thanks to Pat Catan's, and a Fire Truck to play on thanks to Wooster Fire Department:) YEA!!! It's going to be SOOOO MUCH FUN!!!

BIG THANK YOU TO CLEAR PICTURE FOR PLAYING OUR CF COMMERCIALS FOR THE PAST 3 YEARS!! IT'S HUGE AWARENESS FOR CYSTIC FIBROSIS AND I CAN'T THANK THEM ENOUGH!! THEY ARE THE BEST CABLE COMPANY EVER!!!
Let me know what you think:)
M

CF Update / Ayla's Potty Training

Lil' Chris has a CF clinic visit coming up on 3/16 and his cough has gotten much better! Some days he coughs a little and others he doesn't cough at all...weird, but I'm just glad that it is sounding better than before. Thank you all for your prayers and keep 'em comin;-)

Week 1

Week 2

Ayla has been doing GREAT potty training!! She got 7 stickers yesterday!! WooHoo!! She's been only having about 1 accident a day! Not bad for a 25 month old and only being trained for a week and a half!! I'm so proud of her!! She even likes going on the BIG potty already:) One problem though....she's too smart!! She learned pretty quick that in order to get Mommy's full attention, all she has to say is "Poopy on the potty, Mommy!" So of course I put my fundraising stuff away and jump up to go put her on the potty.....and.....then....she....directs me to the couch instead. She just wants to sit with Mommy and play:) She's too funny! She gets me every time, b/c the one time I don't....well...YOU know;-) LOL

Been making good progress with fundraiser stuff:) I just need another day without the kids so I can make some phone calls for the walk. Got some good raffle prizes and Chris and I are almost done making the CF commercial!! Once the commercial is done, I will put it on my Great Strides page and then be emailing everyone on my email list for donations, soooo....get your checkbooks ready everyone;-)

I have a request, my nephew Nathan could really use your prayers. He has Leukemia and his counts are low which is dangerous and he isn't able to take his full chemo. Please keep him in your prayers.

Thanks for all your prayers!!

M

PS. Don't forget to join us on Monday, March 21st at CiCi's Pizza in Wooster between 5-8pm for my first fundraiser for Cystic Fibrosis for 2011!!!

Learn about VX770 & VX809 / Walk Update

If you want to learn more about the new drugs VX770 and VX809, then click on Lungs Behaving Badly to go to another CF moms blog who did a GREAT JOB explaining it! Gemma has a daughter named Sophie who is a couple months older than Lil' Chris and has Cystic Fibrosis and Tracheo-Oesophageal Fistula and Oesophageal Atresia. She is just adorable!! Gemma always leaves me great encouraging comments on this blog, so I just adore her too:)

I hope you check it out....these drugs are the future of CF and they are the reason I do all my fundraising...plus....Gemma has a GREAT blog:)


On a Great Strides Walk update... I got a couple of call backs today and we now have Frito Lays chips and 10 bags of ice from Speedway all donated!! YEA!!!

Here's what the kids like to play with...(remind me again why I bother buying toys???;-) LOL





Have a GREAT day!!

M