CF Clicic Visit 5/8/13 5 yrs old

Thanks Aunt D for making these AWESOME CF shirts...

...esp with our website on the back;p

Pic of Lil' Chris doing his PFT(Pulmonary Function Test)

Lil' Chris' last CF clinic visit on 5/8/13 went GREAT!! His weight 3 months ago was 46 lbs 9oz and this time it was 47lbs 8oz, his height was 47" and is now 48", his PFT was 96/90 and this time it was 84/79(not good). So, he gained 1 lb and 1 inch, but PFT's were down. At that time of the visit, he had a tiny productive cough every now and then(probably why his PFT were down), but we think it was from his stuffy nose from his allergies. His doctor started him on Claritin once a day for allergies, and his cough has gone away, but his nose is still stuffy in the morning. He got a throat culture and they got the results back to me in just 2 days for once!! :) LOL 

The culture result was....

....drum roll please....

"NORMAL!!!" 

WOOHOO!! That's 2 times in a row now!!! AMAZING!! Thank you soooo much to everyone who has been praying for no Pseudomonas or any bad bacteria's!! We GREATLY APPRECIATE IT!!!! 

His last day of Junior Kindergarten is on 5/29 and I'm soooo happy to say that even though he cultured Pseudomonas 2 times during the school year....he still has not had a hospital stay yet!!! YEA!! We have a lot to be thankful for!! 

I have many more things to post, but we have a big weekend planned, so I won't be able to get to it til next week. Be on the lookout for some pics of our big weekend though;) 

Thanks again for your prayers not only for Lil' Chris, but also for Tricia(adult CFer). She had her 31st birthday and then got her new lungs and is doing well. This is her 2nd double lung transplant. Praise God the lungs came just in time!! Please keep the donor family in your prayers as well. 

ARE YOU AN ORGAN DONOR??? I SURE AM!!! :)

M

4th Annual Great Strides Walk was a SUCCESS!!!

Our big 4th Annual Great Strides Walk for Cystic Fibrosis was this past Sunday and it was AMAZING!! We had about 150+ walkers and raised about $20,000 dollars!!! WOOHOO!!!!

Our first year we only had about 50 walkers and only raised about $5,000...I'm so happy how our walk has grown and multiplied!! The more walkers=more money raised=the closer we are to a CURE!!! :) 

Our first year, everyone was able to stand under the pavilion and I would just stand on a table to talk, but this year there were so many walkers, that the only thing that would work was the loud speaker from the Ambulance:) And then Officer Cruz was nice enough to start the walk off with his siren! That was pretty cool! Maybe next year I'll see if Lil' Chris can push the button, that would be neat:)

This year was the first year I had to do all the announcements and everything, b/c Nate from the foundation had to go to another walk. I didn't mind doing it, but I felt bad that I wasn't more prepared. I got up there and completely went blank on a lot of our sponsors:( Next year I will def make a list and be sure to mention all of our sponsors!! So... since I can't go back in time and add them to what I said...I'll just mention them now on my blog(please feel free to share this blog post;) lol....

BIG THANK YOU TO OUR SPONSORS...
Panera Bread donated 100 yummy bagels. THANKS JESSICA!!!
Domino's on Burbank donated 25 yummy pizza's. THANKS VIC!!!!
McDonald's on Burbank donated 30 cheese burgers and french fries. THANKS LINDA and CHRISTIE!!!
Kohl's in New Philly, Medina, and Wooster=$1,500 for the day of the walk!!! WOOHOO!! By Sept, Kohl's will have donated about $7,000 total, and that's just OUR team, not all over the country!! Gotta love Kohl's!!!! If you don't shop Kohl's now.....you gotta start!! They raise millions for Cystic Fibrosis!!!
Wooster Christian School team had 8 different families that were there supporting Lil' Chris:) THANKS EVERYONE!!!
Preferred Wireless Sprint in Wooster
Verizon Wireless on Milltown Rd in Wooster
Wayne Savings Community Bank in Wooster
Starmark Farm in Wooster
General Building Maintance Corp. 
An anonymous $250 sponsor
The Faithful Little Cupcake
Feikert Concrete
Uncle Jim's Pepper Mustard
Pat Catan's
MCTV
Akron Aeros
Buehler's
Wooster Fire Dept
Wooster Police Dept
Samaritan Care Ambulance
Dr. Dave and his AMAZING balloon animals:)
Carrie G-Thirty-One
Stephanie W.-Arbonne
Lu Ann Miller
Phyllis and Reed Seiberling
Tim and Jessica Corbett
Kathi Bond

Overall, we had a BEAUTIFUL day for our walk, a little windy when I was trying to tape down all the prizes and when we all were trying to put up our canopies, but still a gorgeous day!! 

BIG THANK YOU to my fellow CF moms Samantha, Denna, and Alma for all their help!! Denna made little goody bags for all the kids, and made BEAUTIFUL signs for all the CF kids so the walkers could read a little bit about who they were walking for and why. Samantha got LOTS of prizes and I'm happy to say that I actually ran out of raffle tickets!!! That's the first time EVER!!! I still had stuff to give away, but there were no more names in the bucket!! WOW!!! That's awesome!! Thank you Alma and team for all the yummy cookies!!

BIG THANK YOU to Nate for bringing and setting everything all up, and to everyone else who helped out in setting up too...my husband, Spencer, Oma, Opa, Jessie, and Kevin!! I was so thankful that Kevin volunteered to take pictures with his awesome camera this year!! THANK YOU KEVIN, you're the BEST!!! I will post the pictures when I get them:)

THANK YOU to our CFers who we walked for...Lil' Chris, Daniel, Jack, Aden, Sophia, and Aubrey!! You guys did a GREAT JOB wearing your Hawaiian leis the whole time and staying away from each other, because of the risk of cross contamination!! So proud of you all!!

SPECIAL THANK YOU to all who walked for "A Cure 4 Lil' Chris!!" I would name you all, but there were so many, about 80!! That's AWESOME!!!;) We had lots of family, friends, co-workers, neighbors, and  classmates!! I'm sorry I didn't get to go around and talk more with you all. You all brought tears to my eyes with how many showed up just for Lil' Chris!! We can't thank you all enough for giving up a Sunday to walk, and for all your generous donations!! 

BIG THANK YOU to my sister and her kids for driving all the way from NC to walk for Lil' Chris:) We had so much fun at the walk, at Put-in-Bay, and Acres of Fun mini golf!! Can't wait to see you guys again!!

Thanks again everyone who walked, donated, or sponsored our walk!! It sure was a SUCCESS!!! More pictures coming soon!!! :)
M
PS. Update on Lil' Chris' CF clinic visit this last Wednesday coming soon!!

4th Annual Wooster Great Strides Walk is TODAY!!!

TODAY IS THE BIG DAY!!!! OUR 4TH ANNUAL WOOSTER GREAT STRIDES WALK FOR A CURE FOR CYSTIC FIBROSIS!! IT'S NOT TOO LATE TO DONATE!! CLICK HERE TO DONATE AND HELP FIND "A CURE 4 LIL' CHRIS" AND ALL WHO SUFFER FROM CYSTIC FIBROSIS!!!!

What is Great Strides???.....
In cities all across the United States, tens of thousands of people just like you are showing their commitment to "adding tomorrows" to the lives of those with cystic fibrosis through the simple act of walking.
Year after year, volunteers make every Great Strides walk site both fun and successful. Their dedication has helped Great Strides become one of the country's most effective and efficient fundraising efforts. Since the first Great Strides walk in 1989, millions have been raised to support the vital research and care programs of the Cystic Fibrosis Foundation.

Why We Stride???.....
In 2012, nearly $40 million was raised to help support life-saving research, quality care, and education programs. Real progress toward a cure has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease.
Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event. More than 250,000 walkers come together each year as one community for one cause…to help find a cure for CF. I would like to thank all those who are going to be at our walk today to be a part of a CURE for Cystic Fibrosis!!! Your support really means a lot to all of us CF families!!!! THANK YOU!!!!


SEE YOU AT 11AM!!! I'M SOOOOO EXCITED!!!
M

Day 4 CF Awareness / Are you a CF carrier??

 Meet Aden...a new CF team:)

 Meet Aubrey...another new CF team for this years walk:)

May is CF Awareness Month, so I will try to update everyday this month. Here is Day 4...

Did you know that more than 10 million Americans are unknown, symptomless carriers of Cystic Fibrosis?? They carry the defective CF gene. My 2 sisters and my sister-in-law and my husband and I are all CF carriers. None of us ever knew until my middle sister was tested in 2003 while she was pregnant. Then my older sister was told during her 3rd pregnancy (they didn't do that testing with her first 2 pregnancies). My sister-in-law found out during her first pregnancy. Fortunately their husbands were not carriers. Both my husband and I carry the Delta F508 defective gene, which we found out after Lil' Chris was born. We never knew it until Lil' Chris was already conceived. Therefore, Lil' Chris was born with Double Delta F508, which is the most common CF gene. In order for someone to have CF, they must inherit a defective CF gene from both parents.
Each time 2 carriers of the defective gene conceive, there is a 25% chance that child will have CF, a 50% chance that child will be a carrier, and a 25% chance that the child will not have the CF gene at all.
The odds remain the same with each child. The severity and symptoms of the disease vary considerably due to different mutations of the gene. As of right now, we have been told that Ayla is not even a carrier! We are going to get her re-tested just to make sure.

We are all ready for our big CF walk tomorrow!!! My sister and her kids are here from NC and are going to walk with us!!! YEA!!! They were here for our very first Wooster walk, and now they are going to get to see how much our walk has grown:) I registered all my walkers that I know of, and there are about 80!! WOOHOO!!! It means sooooo much to have sooooo many support Lil' Chris. I can't even put our appreciation into words! And we have so many that donated but can't make it to the walk that we greatly appreciate too!!! THANK YOU ALL!!!

Here are the happenings for the walk tomorrow...

We will get there to set up around 9 or 9:30
Panera Bread will be there at 10:30 with yummy bagels:)
There will be fruit, water, juice, and lemonade
The Ambulance will get there around 10:30 and be there for the whole walk, I believe
The Fire Truck will be there from 11-noon
Pat Catan's Craft Table will be there at 11
Police Car will be there around 12:30-1:30p
Dr. Dave will be doing balloon animals
Domino's Pizza will arrive at 12:30
McDonald's cheese burgers and french fries will be there around 12:30
There will also be yummy cookies, chips, crackers, and more
After the walk, there will be many awesome prizes too!!! YEA!!!!

Hope to see you there!!!
M
PS. Please continue to pray for Tricia(adult CFer), she desperately needs new lungs, but is stable right now on a ventilator.

Day 3 CF Awareness / Vest 1,540 Hours

Lil' Chris has officially passed the 1,500 HOUR mark on his Vest!!! Sad...but glad that we have been diligent in making him do his Vest every morning and every night for 30 minutes each since he was 11 months old. The Vest helps shake his chest, sides, and back to help loosen the mucus in his lungs so he can clear it out easier and breathe easier.

....kinda funny...I actually started this post over a month ago, so now he is up to 1,540 or something like that:) LOL Can you tell I've been busy getting ready for the walk this Sunday?? LOL :)

For those who don't know, Lil' Chris has to do his Vest or this airway clearance technique 2 times a day 30 minutes each for the rest of his life...until a CURE if found!!  Ya know...before when I used to write that, a cure didn't seem like it was ever coming, but now...I really believe he might actually some day NOT have to do his Vest anymore!! That's all thanks to you who donate each year to help us get one step closer to a cure!! THANK YOU SOOOOO MUCH!!!
M 

Day 2 CF Awareness / Sponsor / Pray for Tricia

For Day 2 of CF Awareness month, I wanted to share this awesome news about the great results they are having of the combination of Kalydeco and VX 661! This is for those who have DF508 CF genes, like Lil' Chris. Click the link below to read all about it and other trials they will be starting too!!...


http://www.cff.org/aboutCFFoundation/NewsEvents/2013NewsArchive/4-18-Phase-2-Combo-Study-Kalydeco-VX-661-Results.cfm


Great news!!! We just got another sponsor for our walk this Sunday!!! BIG THANK YOU to Starmark Farm for being our Single Rose Sponsor!! YEA!!! THANK YOU THANK YOU THANK YOU!!!

The walk is this Sunday at 11am behind Ida Sue School!! I can't believe it's time already!! We have everything set and ready to go and have some fun!!! We will be collecting any money you have raised or any donations you would like to give personally. If you raised or donated over $100, you will get a CF t-shirt!! YEA!!!

If you haven't registered yet, click my Great Strides link in the upper right hand corner of my blog and "join my team" or "click to donate" today!! Thanks!! 

I found out that the New Philly Kohl's and possibly Medina and a couple others might be at our walk too!! WOOHOO!!! Those $500 grants sure can do a lot to help us find a CURE for CF!!! THANK YOU KOHL'S!!!!

Hope to see you there!
M
PS. Please keep Tricia in your thoughts and prayers. She is an adult CFer who desperately needs a double lung transplant ASAP!! Are you an organ donor? If not, sign up today and you could save up to 14 lives!!

Pray for Tricia!!!!

http://cfhusband.blogspot.com/2013/05/icu-day-3.html?m=1

Please go to the link above and read an update on Tricia's condition. 

She has taken a turn for the worse this past week. 
She was the first adult CFer I found online when Lil Chris was first diagnosed. 
She really means a lot to me. It's really hard to take this news all in. 
The Lord performed a miracle on her and her daughter 5 years ago, and He can do it again!!
Please pray with me for a miracle!
Thanks so much. 
I had another post for today being the first day of CF Awareness month, but prayers for Tricia are more important right now.