Disney 2012 Vaca Photo Book

Check out this Photo Book we made by Shutterfly of our 2012 Disney Vacation...(better late than never, right??) LOL

Click here to view this photo book larger

Shutterfly photo books are the new way to preserve your memories. Create your own today.

Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

Community Garage Sale/CF Bake Sale Sat 6/15 8a-3p

Our Annual Community Garage Sale is Sat June 15th from 8a-3p!!!! If you want the address, please email me at lilcmom@gmail.com. 100% of everything we sell at our house is going towards a CURE for Cystic Fibrosis and our neighborhood is doing a Bake Sale/Goodies for CF!!! Some houses will have baked goodies, others will have hot dogs or chips or drinks, etc... We are trying something a little different this year instead of everyone just doing baked goods:)

Last year we all raised $400!!! I wonder if we can reach $500 this year???

The other day, we got a visitor from a lady that lives up the road in an elderly home. She is in a wheelchair and remembers us from our Garage Sale last year, and remembered about us raising money for Cystic Fibrosis for our son. She said that she is having her own sale and that she wants 100% to go towards a CURE for CF!! Isn't that the nicest thing ever!!! Her name is Barb and will be visiting us at our garage sale too. I can't wait to thank her for her generosity and for thinking of us:)

This is why we do the community bake sale for CF...not JUST to raise money, but to spread the word about Cystic Fibrosis!! One in 31 Americans is a symptomless carrier of CF, just like my husband and I. Two carriers together have a one in four chance that each child will have Cystic Fibrosis. Lil' Chris was our 1 in 4 chance. Luckily Ayla was not born with CF.

So, spread the word about CF neighbors!! The best website is cff.org!!

BIG THANK YOU TO ALL OUR NEIGHBORS AND BARB WHO ARE HELPING US GET ONE STEP CLOSER TO "A CURE 4 LIL' CHRIS!!"
M
PS. Lil' Chris is doing great and can't wait for his cousins to come from NJ tomorrow for the whole week:) Also, we are so happy that Sarah, 10 year old CF girl, was able to get her new lungs!! It's been all over the news and I am so proud of her mom for doing everything she could to save her daughter by petitioning for her to get lungs even though she is under the age limit.

Fun Weekend Project!!

Here it is....

 Lil' Chris and Ayla helping:)

 This is just steps 2-12 out of 35 steps of wood with their bags of screws and nails(lots of prep work)

 My sheet to organize each step;) LOL

 Our AWESOME neighbor, Sean, was a HUGE HELP!! THANK YOU SEAN!!

 Lil' Chris helping:)

 Lil' Chris helping get the roof started:)

 Ayla is on the 2nd floor, and the Chris' are on the 3rd floor;) lol

 One roof is up!! It's so cool that Chris and I can stand up straight on the 2nd floor:)

 Chillin while Daddy and Sean put on the 2nd roof:)

 About to put on the swing part!!! YEA!!

 Playing while Daddy puts the picnic table together:)

 Ayla swinging while Lil' Chris was at his last day of JKindergarten. She was happy to have it all to herself:)

 They go pretty high! Their heads go above the 3rd floor!! This is their favorite part...the yellow swing;) LOL

 Having their 1st picnic at their new picnic table:) It's kinda nice in the shade behind the rock wall and slide!

 Spying on me with their telescope, and Ayla driving the ship with the wheel!!

They couldn't be happier:) The smiles on their faces every time they play on it, makes it all worth it:)

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.