Our 2015 CF Commercial that plays on MCTV

Saturday, April 9, 2016

2016 CF Walk May 15th at 11am

As I am preparing for our 7th Annual Cystic Fibrosis walk, I realized that I haven't blogged in awhile. :o

I just wanted to let everyone know that this year our CF walk will be at the same location behind Ida Sue School on Sunday, May 15th. Check-in time is 11am and the walk begins at noon. We hope you can join us! It will be a lot of fun! We will have free food, entertainment for the kids, and more!!

Here is the link to register to walk with us or to donate for a CURE for Cystic Fibrosis in honor of Chris...


Big THANKS to Oma for collecting prizes and setting up fundraiser events!! I used to have so much more time and energy to do those kinds of things, but since I got promoted at work, it's been a lot harder. So THANK YOU, OMA for picking up my slack;)

Be on the lookout for our 2016 CF commercial on MCTV soon!! BIG THANK YOU TO MCTV for always running our commercial one month before our walk!

As for an update on Chris, he is doing REALLY well, Praise the Lord!! So when I don't update on this blog....no news is good news;) I pray I never had to update bad news.

This is Chris at his last 3 month checkup. He has to breathe as hard and as long as he can through that machine to see how his lungs are doing. His PFT number wasn't the greatest(85/94), but the doctor wasn't too worried at this time. Praying his results are much better when we go in June.
Here is Chris' new vest! He wanted a purple one, because purple is the color for CF. He said next time he wants to get a pink one for Cancer. Love this kids heart:) He does 30 minutes of his vest EVERY morning before school and EVERY night before bed to help him breathe easier. He is inhaling Pulmozyme in the picture, which he does EVERY evening. These are one of the many reasons we walk and raise money for a CURE for CF!! So that one day CF will stand for Cure Found!! :)

Wednesday, May 6, 2015

5/6/15 GREAT Annual Clinic Visit

Chris had an AMAZING annual clinic visit today!! Here are his results that I keep in my phone in an app called Easy Lists(highly recommend it, I use it for everything;)...5/6/15 almost 8 yrs old-53.25", 64 lbs, 78th% weight, 92% height, 52% BMI, PFT 96/93. Last visit was on 12/17/14 52", 57.5 lbs, BMI 14.96 30th percentile, PFT 111/110.

So he gained over an inch, and a whopping 6.5 POUNDS!!!! WHAAAAAT?????? That's the most pounds gained EVER!!! I guess his new enzymes are really working!! We couldn't be more happy!!! They even said he doesn't really need to do the Scandishakes(600 calorie supplement drink) anymore!!

His PFT's went down some, but he wasn't trying very hard because his belly was hurting all morning. Poor thing, it was hurting throughout the whole visit off and on. He's ok now though.

He didn't need to get chest X-rays this year, but he did need to get blood work done. He was such a big boy!! He didn't cry at all!! Test results and culture results will come soon.

We tried asking about getting the Afflovest, but they didn't recommend it. Until there is proof that it works just as good as his Hillrom vest, they won't prescribe it. Bummer. I've heard great things about the Afflovest and it would be very nice to have for travels, because it runs off of battery packs. So he could do it in the car or even walk around with it on! Oh well. If it's not going to be good for him, then we don't want to chance it.

I also asked about getting the eRapid Nebulizer for his daily Pulmozyme that he inhales. They are going to try and get it for us. It will cut his treatment time from 10-15 min down to 2-3 min!!! Woohoo!!! :)

All in all, a GREAT annual clinic visit!!!

Our CF walk this past Sunday went GREAT as well!! The weather was beautiful and we raised about $27,000!!  I will post pictures soon!! :)

Thursday, April 16, 2015

2015 CF Great Strides Commercial

Here is our 2015 Great Strides Commercial for our Wooster Cystic Fibrosis Walk on Sunday May 3rd. Check-in is at 11am and the walk begins at noon. It's located at the pavilion next to Ida Sue School on 266 Oldman Rd in Wooster.

I hope you can join us! If not, please consider donating to this amazing cause! Click this link to donate or to register to walk, it only takes a second... http://fightcf.cff.org/goto/acure4lilchris

BIG THANK YOU TO MCTV FOR HELPING DO OUR COMMERCIAL THIS YEAR!! Mark, you put it together beautifully!! Our best commercial yet!!! :)

Thursday, March 12, 2015

2015 Walk Update

I can't believe it's that time of year again!! I've been busy planning our 6th Annual Great Strides Walk for a CURE for Cystic Fibrosis in Wooster!! It will be on Sunday, May 3rd at the pavilion by Ida Sue School. Registration begins at 11am and the walk begins at noon. Hope you can join us!!

So far, I have most of the food and entertainment nailed down...
-Panera Bread Bagels
-Domino's Pizza
-Buehler's fruit
-Ice from Speedway
-Pat Catan's craft table
-Dr. Dave the Science Guy doing balloon animals
-The Cat's Meow character will be there again from 1-2p
-Wooster Fire Truck will be there from 11-12:30
-Samaritan Care Ambulance will be there from 11-2:30

I'm working on getting prizes for the walkers, so if anyone wants to help, that would be AMAZING!!! BIG THANK YOU to Debbie C. for offering to help gather some prizes this year!!! THANK YOU DEBBIE!!!!! YOU'RE THE BEST!!!!

Also, I'm working on trying to get sponsors, either individual single rose sponsors of $125, or corporate sponsors(ranges from $125-$10,000). If you know of a business that does this, please let me know and I will contact them. Their business will be represented at the walk on a big sign!

If anyone has any other great ideas for us to add to our walk this year, please let me know! I'm always trying to think of new creative things to make it more fun for everyone!! :)

Don't forget to register to walk so I know how much food to get!! It's quick and easy to register and saves time the day of the walk! Here is the link to register for our 2015 walk, just click on the team that you want to register under(my team is A Cure 4 Lil' Chris) or click Join A Team... http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?fr_id=3488&pg=entry

Our walk so far has raised $5,630 and the goal is $35,000, so please register and start fundraising today!!! Ask 10 friends and family for a $10 donation, and you will get a FREE Great Strides T-shirt at the walk for raising $100!! :)

We are so close to a CURE and the only way we will get there is by raising the MUCH NEEDED money to help in the research!! Please, join us or donate!!! Get creative in your fundraising! My kids classes are going to do "Change for CF" where they bring in loose change for a month! :)

We are working on getting the commercial for the walk done. BIG THANKS TO MCTV FOR ALWAYS BEING SO KIND TO PLAY IT THE MONTH BEFORE OUR WALK IN ANY OPEN SPOT THEY HAVE!!! THEY ARE THE BEST!!!! :) I'll post it when it's all done.

Thanks, I'll keep you updated!!


Wednesday, February 4, 2015

New Enzymes 1/29/15

Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)

One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??

A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.

At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.

So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)

As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!

Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)

I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!

Have a GREAT day!!

Wednesday, July 23, 2014

Photo Book

Click here to view this photo book larger

Photo Book Tip: Create an adventurous travel photo album at Shutterfly.com.

Tuesday, June 10, 2014

Garage Sale/CF Bake Sale Results

THANK YOU EVERYONE who bought something at our garage sale and the CF Bake Sales a week ago!! We raised about $400 for a CURE for CYSTIC FIBROSIS!!! WOOHOO!!!
BIG THANK YOU TO OUR AWESOME NEIGHBORS for doing the CF Bake Sale to help raise money for CF!!! You guys are always such big supporters!! We can't thank you all enough!!!
I also got some Loyal Customers and 10 leads for my new It Works company!! A portion of all of my It Works sales goes towards a CURE for CF too!! If you want to try those crazy wrap things, let me know!! We have lots of other all natural products too!! My website is www.wraps4cf.com and we are not limited to just the US:) If you have any questions, you can email me through my website at the bottom:) So thankful for this company since my husband lost his job! I esp love that it's all natural products and that it is a Christian based company:)
Thanks again everyone!!

Thursday, May 29, 2014

5th Annual CF Walk Results

WOW, I have so many people to thank, I don't know where to begin...;)

First off, BIG THANK YOU to all who walked with us and helped get donations for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis!!! So many of you have brought tears to my eyes with your dedication to raising the much needed money for a CURE and longer life for my son. So many of your friends and family have so generously donated even though they don't know us. I will be forever grateful to YOU and THEM!!! Every penny gets us closer and closer to a CURE!!

David and Debbie C. (raised over $1,000!! AWESOME JOB, the most EVER from a team walker!!:)
Kevin and Jessie W.
Deb and Mike W.
Stacy W.
Kristin K.
Ashleigh and Cody S.
Andrea and John S.
Lynnette and Jillian C.
Miller Family
Gail R.
Butler Family
Spencer H.
Josh W.
Cody S.
Robbie and Jamie
Rosie C. and family
Morgan, Ella, and family

BIG THANK YOU to those who have donated towards my team, A Cure 4 Lil' Chris!! I know most of you live very far away and can't make it to our walk, but I'm so grateful for your support and generous donations to help end Cystic Fibrosis!!
Barb N. (Thanks for my first ever reoccurring monthly donation!!:)
Steve, Danielle, Cara, Eva, and Rafe S.
Al and Nancy S.
Aunt Mar
Centeno Family
Aunt Donna and Uncle Jerry
David and Elizabeth Harcus
Paul and Kim S.(made my birthday with their donation:)
Rachel P.
Stacy W.
Carol S.
Holly S. (Thanks for doing your party to raise money for CF!!)
Tiffany L.

BIG THANK YOU to the business sponsors I got this year! We are soooo grateful that your business would help support our great cause!!
Kohl's ($5,000)
Sprint Preferred Wireless($500)
Anonymous Sponsor($250)
Verizon on Cleveland Rd($125)
Wayne Savings Bank($125)
The Borelli Agency
Alice Noble Ice Arena
Sign Design Wooster
Panera Bread
Jimmy John's
Woo's Brew
Speedway for ice
Everyone who made cookies
Pat Catan's
Wooster Fire Dept
Samaritan Care
The Cat's Meow
Dr. Dave

I gotta thank my AMAZING team at Kohl's for doing all my CF fundraisers throughout the year and for coming to our walk! I can't thank you guys enough for all the support and for helping us raise $5,000!!
New Philly Kohl's for driving all the way to Wooster to our walk:)
Rachel P
Jen M
Jen E
Stacie M
and I'm sure many more that helped out at one point or another with my fundraisers:)

I'd like to thank our AWESOME Wooster Christian School Team that walked with us too...
Mr. Claes
Mrs. Falkenberg and family
Mrs. Curtis and family
Jillian and family
Tripp and family
Alexis and family

BIG THANK YOU to Mrs. Falkenberg(Ayla's teacher) and Mrs. Buehler(Lil' Chris' teacher) for collecting change for CF over the past few months in the classrooms!! And BIG THANK YOU to all the kids who brought their change in to help support a cure for Lil' Chris!! We are very thankful to you all!! Wooster Christian School is the BEST!!!!

Our whole walk was a HUGE success and so much fun!! We had about 200 walkers!! WOOHOO!!We had 8 different teams!!  All together, the teams brought in about $5,000 to the walk!! Together with what was raised online with all the teams, and what was brought in, and what will be coming in soon, it totals to about $28,409!!!! That's AWESOME!!! The most our walk has EVER done!! BIG THANK YOU to all the teams for raising so much!!

Our A Cure 4 Lil' Chris team brought in $10,195 so far!!! OUTSTANDING!!! THANK YOU ALL!!! We will still be collecting donations until Sept, so hopefully we can do some more fundraisers and hit $30,000!! THANK YOU EVERYONE SOOOOO MUCH!!! I'm sorry if I didn't get to talk to everyone at the walk...as you could see, it's kind of a crazy day for me making sure everything runs smoothly;) Our CF Northern Ohio Chapter, which is a total of 7 different walks, raised a total of $652,108!!! I smell a cure coming!!:)
 BIG THANKS to the Lord for the beautiful weather and no rain!! Thank You for answering our prayers, b/c it was supposed to rain that day.

We are having a big community garage sale this Sat from 8am-4pm and everything sold from our house will go towards a CURE for CF!! The other houses in our neighborhood are selling baked good for CF!! We just love our neighbors:) They have always been such big supporters of Lil' Chris!!

I started a new business called It Works! They are those crazy skinny wraps that everyone is talking about that work in just 45 minutes:) I tried them, and they ACTUALLY DO WORK!! So, I decided to spread the word about them to help out other people. I will be selling them at my garage sale too, and a percentage will go towards a cure for Cystic Fibrosis!! I originally started this company with intent to have all my commission go towards CF, but then my husband ended up losing his job 10 days later, so not all will go towards CF, but most of it will:) Come see me if you want to try one!! Message or email me for address lilcmom@gmail or you can order straight from my website www.wraps4cf.com. I've been doing pretty well, b/c the results sell the products, not me:) If you'd like to join my team and be debt free, let me know. It's only $99 to join and you get a box of wraps that you can sell for $100...so you earn your money right back!! Now is the time to join, b/c this company is skyrocketing, esp with Summer approaching:)

I'm sure I forgot about someone to thank, but please know that we GREATLY APPRECIATE EVERYONE and EVERY PENNY RAISED!!!!

We hope to see everyone again at our walk next year!!!
PS. Lil' Chris didn't have the best last CF clinic apt. He didn't gain any weight, CFers need to eat lots of calories to stay healthy. He has his annual CF clinic apt this coming Wed, so I will let you know how it goes. Pray for great results all around, b/c our Make A Wish trip is coming up soon!!! YEA!!

Saturday, May 3, 2014

What to Expect at our CF Walk

I'm soooo excited for our big Cystic Fibrosis Walk tomorrow!!! I've got everything all packed and ready to go!! Here is a pic of most of the prizes that we will be giving away to our walkers...
Lil' Chris wanted to get in the pic:) LOL

He had his first baseball game today!! He hit the ball 3 times!! Go Chris!!! Here he was all ready to go!! :)

So I thought I would go over what to expect at the walk tomorrow for those who have never attended before(CF parents, please share/tag this with your teammates)...

-Nate from the CF Foundation will be there in the beginning helping us get set up, then he will have to leave to go to another walk. Say Thank You to him if you get a chance:)
-Try to get there at 11am, because that's when most of our entertainment will be arriving. The kids can explore the Fire truck, the Ambulance, make a craft at the Pat Catan table, get a balloon animal made, meet Casper the Cat(if weather is good), and get their hair sprayed with some color:) The gold glitter one is for our CFers only, so we can tell them apart. CFers can't be near each other because of the risk of cross-contamination, so they will have to take turns at each station and sanitize thoroughly afterwards. We will need everyone's help keeping them separated.

-As soon as you get there, go to the registration table to check-in and to make your donation or to turn in any money that you have raised. Be sure to put each walkers name on their own raffle ticket for a chance to win a prize!!! They will give you a ticket to get your free CF Shirt if you raised over $100!! Then go to the shirt table to pick it up!
-Next, check-in with your team leader and go explore the entertainment and have fun!! Don't forget to grab a bagel or fruit and some coffee courtesy of Panera Bread and Woo's Brew's!!
-At 11:45 I suggest all the teams go to their team leader to take a team picture:)
-At 11:50 I will start the announcements. I will announce the sponsors and we may do a group picture if we can. Then the walk will begin at noon.
-At noon you walk 2 laps around and then head back to the pavilion for some pizza, chips, snacks, cookies, and water/soda/juice. Bathrooms will be open by the soccer fields.
-When your done eating, check the prize table to see if you won anything! :)
-Then you can check out the entertainment one last time before they leave. Be sure to thank them for donating their time to be with us!! :)
-I will not make any other announcements, so you will be free to go whenever you like:)

I still need some volunteers for the following, so let me know...
-someone to come early at like 10:30 to put the arrow signs up around the walking path
-be in charge of the food and drinks(keeping it full and handing out the pizza)
-do the color hair spray
-someone to make sure the entertainment gets food and drink(I always forget:)
-someone to take pictures


See me or your team leader if you have any questions. Thanks again for all the money you have raised!! See you tomorrow at 11am at Ida Sue School pavilion 266 Oldman Rd, Wooster!!!

If you can't make the walk but would like to still make a donation, click here to donate to your team!!

Friday, May 2, 2014

Update on our Walk / Cat's Meow


Guess what??? Casper the Cat from The Cat's Meow will be at our walk this Sunday if the weather is good!! YEA!! The Cat's Meow is also selling a special CF product in their store this WHOLE YEAR where a percentage of each of it's sales will go towards a CURE for Cystic Fibrosis!!! Isn't that AWESOME!! Every CF home needs one of these! Click here to order one today... https://www.catsmeow.com/

The walk is this Sunday at 11am at the pavilion by Ida Sue School and it's not too late to register to walk or to donate!! Click here... http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280 I am personally at $3,025 on a goal of $5,000!! We can do it!!! We will be taking donations for this years walk up until about September, then we start to switch over for next years walk:)

And other good news, Jimmy John's is donating a 15 piece tray of sandwiches for our walk!! YEA!! AND Woo's Brew's is donating coffee!! YEA!!:) If you would like to see what else we are going to have at our walk, click here for my last post or click "older post" at the bottom.

Thanks so much everyone who keeps spreading the word about our walk and for posting my Great Strides link!! We've had such GREAT teamwork this year!! Our team has raised over $5,000!!! WOOHOO!!! That's mostly all thanks to friends and family who keep reposting my link or my blog!! THANK YOU THANK YOU THANK YOU!!! KEEP UP THE GREAT WORK!!! :)

Hope to see you Sunday at 11, b/c all our entertainment will be there starting at 11!!

Sunday, April 27, 2014

ONE WEEK til our CF WALK!!!!

Only ONE WEEK until our 5th Annual Great Strides Walk for a CURE for Cystic Fibrosis!!! I'm so excited!! I can't wait!! If you haven't registered yet or donated, it's not too late!! It's on Sun May 4th, check-in is at 11 and the walk begins at noon at 266 Oldman Rd Wooster. Click this link to sign up under a team that you know(my team is A Cure 4 Lil' Chris;)...http://fightcf.cff.org/site/TR?pg=teamlist&fr_id=2280 Our new walker this year has passed me! They have raised more money than me at this point...that's AWESOME!! WAY TO GO McKenna's Maniac's!!! I'm not done yet though;p LOL

Here is what we are going to have food wise this year:
-Dominos Pizza
-McDonalds Happy Meals
-Panera Bread bagels
-Buehler's fruit
-Cookies for dessert:)

Here is what we are going to have entertainment wise:
-Wooster Fire Truck
-Samaritan Ambulance
-Pat Catan's Craft Table
-Colored Hair Spray(CFers will be identified by having glitter spray in their hair along with purple or another color:)
-Dr. Dave the Science Guy will be making balloon animals:)

Here are just some of the prizes we will be pulling raffle tickets just for coming to the walk and donating:)
-2-Free 12oz cup of Frozen Yogurt at OH-YO's
-6-$5 Gift Card to Donatos
-2-$10 Gift Certificate to The Parlor Restaurant
-$25 Gift Certificate to El Campasino
-3-Free hair cut at Great Clips
-3 month membership certificate at Curves
-4-Free small combo at Arby's
-11-Buffalo Wild Wings scratch cards
-2-Akron Rubber Ducks Tickets
-4-One Large Pizza at Pizza Hut
-Free oil change at Wooster Lube Express
-$25 gift card to Staples
-$20 gift certificate to The First Amendment Public House Restaurant
-4-2 free items at Taco Bell
-Free bread once a week for a year at Panera Bread:)
-200-free small kiddie cup of frozen yogurt at Kate's Diner:)

And of course, you will get a free Great Strides T-shirt for a donation of $100 or more!! :)

We are working on getting a Hot Air Balloon, a DJ, and some more prizes:) It's going to be a lot of fun, so bring the whole family and don't forget to wear your walking shoes and sunscreen! Pray for great weather!



Tuesday, April 15, 2014

Canton Great Strides Commercial 2014

Here is the Canton Great Strides Walk commercial my hubby made!! It'll play on MCTV in Massillion until the walk day!! It's on Sat May 3rd at 9am at McKinley High School if you can make it!!


Please share!! Awareness is KEY to a CURE!!!

Friday, April 11, 2014

Make A Wish!!!

I was going to blog about the exciting things we are going to have for our walk and to thank those who have donated and signed up to walk with us so far, but....I HAVE SOME EXCITING NEWS TO SHARE!!!!!!!

Lil' Chris has been approved for his wish to be granted from the Make A Wish Foundation!!!! YEA!!!!!!

We are all soooo excited!!!! I know you are probably wondering where we are going, so with no further ado ......DISNEYLAND in California!!!! WOOHOO!!!!!

It's kinda funny, b/c up until the day the Make A Wish volunteers came out to ask what his wish was, he kept saying he wanted to go on a Disney Cruise. Even right before they walked in, he was still saying Disney Cruise, with Disneyland as his 2nd choice. When they asked him what his wish was though, he said Disneyland. Not sure why, but we are glad he made that big decision all by himself. After the shock of him changing his mind, we realized that he made a great choice, b/c he will have much more fun at Disneyland going on all the rides, since that's his favorite thing in the world to do:) Good Job, Buddy!! We are so proud of you!!

All the details still have to be worked out, but we can't wait!!! Of course I will have lots of pics for you all when we get back:) It's not for a few months though, so this is going to be the longest few months ever! LOL

We are VERY thankful for this opportunity that Lil' Chris' CF dr has approved him to be ok enough to go on this trip, and for the Make A Wish Foundation to send us on this trip!!! We couldn't be more happy!

We are so thankful that his health has been good and he is able to enjoy such a great opportunity. It will truly be something he will remember for the rest of his life no matter how long or short it is. Wow, it's hard to type that, as I'm sure it's hard for you to read that, but it's the reality of Cystic Fibrosis. His health could change at any time. We are so thankful that his school has been so good about trying to keep him as healthy as possible, especially through this rough, long winter. THANK YOU Wooster Christian School staff and parents!!! You guys are the BEST!!! They are even doing "Change for CF" to help raise money for a CURE by bringing in their loose change!! Some school families have already signed up to walk too!! We are hoping to have a big WCS team at our walk again like last year:)

I'd like to try and give back to Make A Wish, so I'm going to try and set up some AiA events through Kohl's to help get them some $500 grants from Kohl's. Also, if you would like to give back, here is the link to our Make A Wish chapter to donate...http://oki.wish.org/

Also, here is the link to sign up to walk with us on May 4th or to donate for a CURE for Cystic Fibrosis...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280

Thanks so much everyone!! Please pray that Lil' Chris stays healthy these next few months so we can go on our trip to Disneyland!!!

PS. I got lots of good prizes yesterday for our walkers...details coming soon:)

Thursday, March 27, 2014

2014 Great Strides Commercial for our 5th Annual Wooster Walk

Here it is...our 2014 Great Strides Commercial for our 5th Annual Wooster Walk for a CURE for Cystic Fibrosis!!!! It will play on MCTV in Wooster starting in April until the day of the walk on May 4th. So, be on the lookout;)


Featured in the commercial are CFers...Lil' Chris, Harrison, Aden, Aubrey, and Sophia.

Harrison will be new to our walk this year...he's such a cutie:) It looks like we may have another new team this year too...McKenna's Maniacs. I haven't met them yet, but I look forward to meeting them at the walk:)

Our goal for the walk this year is a total of $22,000 raised and so far between all the teams, we are at $4,615. Not bad, but we got a long ways to go. So if you know of any businesses that would like to sponsor our walk, please let me know! We have different levels of sponsorship and we will advertise their business at our walk.

Also, our goal is to have 200 walkers and right now we are at 55, so please make sure you sign up today! It's easy to register, just click the team you want to join and then click "join our team" and answer a few questions and make a password. Quick and easy!! Usually I register most of my team for them, but with the new website this year, I found out that I can't. They have to register themselves, but luckily it's not hard and the best part is...whenever I share my team link, someone could donate towards ANY of my walkers!! That's pretty cool!! We can try to share the love:) Remember, if you raise $100 or more, you will get a free CF shirt at the walk:) All you have to do is ask 10 people to donate $10 or 5 people to donate $20!! Simple:)

Here is the link to all the teams, so all you have to do is click on the team you want to donate to or "Join" to walk or help raise money!! http://fightcf.cff.org/site/TR?pg=entry&fr_id=2280

I'll update more about all the fun things we are going to have at the walk soon:)

PS. I posted the new commercial at the top of the blog also, and it will stay there in case you ever want to watch it again when you check one of my posts;)

2014 Great Strides Commercial Coming Soon

Check back soon
for our new 2014 Great Strides Commercial for our walk for a CURE for Cystic Fibrosis
coming up on Sunday, May 4th at 11am at Ida Sue School Pavilion!!!!
Gonna be LOTS of FUN!!!!! Will update more soon!!
Please pray for our committee team as we try hard to make the walk a GREAT day:)

Saturday, March 22, 2014

Thank You!!!!!

Postcards by Vistaprint

My wonderful hubby just ordered this years thank you cards for donations and help with the walk:) I usually don't share them on here, but it's so cute, how could I not;)

If you would like one of these cards, just make a donation on Lil' Chris' Great Strides page or sign up to walk with us for a CURE for Cystic Fibrosis!!! Click this link, it's fast and easy and 100% tax deductible...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280

Big THANK YOU to Kohl's, Barb N, Paul & Kim, Holly S, Stacy W, and Aunt Mar for your donations!!! We GREATLY APPRECIATE EVERY PENNY!!! The researchers are soooo close to a cure and you guys just helped us get closer...can't thank you enough!!! :)

BIG THANK YOU to Dave and Debbie C, Kevin and Jessie, and Deb W. for signing up to walk with us on Sunday May 4th for a CURE for CF!!! Can't wait!! It's going to be so much fun!!!

Our goal is $5,000 and we are currently at $2,110!! WOOHOO!!! This kids classes at Wooster Christian School are doing "Change for CF" to raise money!! YEA!!! Thanks for the support WCS!!!

Thanks Everyone,

Tuesday, March 18, 2014

Cough Update

Sorry it's been awhile, but I've been busy fundraising and organizing for our upcoming walk for CF on May 4th. This is our 5th annual walk!! I can't believe how time flies! Seems like yesterday I made the call to the CF Foundation to get a walk started here in our town since all the other walks are kinda far:)

I'll update you more on the walk later, but for now I'll fill you in on lil Chris...My last post was when he had that bad cough and we thought he was going to have to get an antibiotic for it...we'll, I'm happy to say that his cough went away on its own and I didn't even need to call the clinic!!! YEA!!!! I was so relieved!! He's has been doing great since!! Thank you all sooooo much for all your prayers!!! God definitely heard our prayers and answered them!!

Well, I gotta get back to fundraising... I'm in the process of writing a letter to the kids classes about joining us for our walk and raising money for A CURE 4 Lil' Chris;)

Keep checking back for some exciting news coming soon:)

Saturday, February 22, 2014

CF Update-Cold and Cough:(

Last weekend, we all got a cold, and now we all have a cough:( Poor Lil' Chris coughed his head off all day yesterday. A wet/dry cough. We tried everything...Albuterol puffer, Mucinex, Pulmozyme, Vest, Acapella, manual CPT, Vicks Vapor rub on his chest and feet to help him sleep last night(thanks Nancy for the reminder, I totally forgot we had that:). I felt so bad, he just couldn't stop coughing. At one point I started counting in between coughs to see how high I could count...I only got to 17 seconds:(

Luckily, he finally fell asleep last night and was able to sleep through almost the whole night. Of course, he woke up coughing again though, not as often, but still a lot:( I know the CF clinic won't give him an antibiotic unless he's been coughing for a few days to a week to see if it will go away on it's own, b/c they don't want him to become immune to the antibiotics. So, if he's still coughing by Monday, I'm calling to get an antibiotic. Hopefully his cough will be gone or hopefully the clinic will be good and prescribe an antibiotic ;p

Normally when he gets a bad cough they tell us to up his Vest from 2 times a day to 3-4 times a day...kinda hard when he is in school from 9-3:30. I know some parents who take the Vest to school and do treatments there during lunch or something, but I don't know how he would respond to his class mates seeing him do his Vest. So we will just have to do Vest before and right after school and then right before bed. So that's 1 1/2 hours each day, poor kid. Luckily he has been in good spirits. He goes along playing and laughing like he's not even coughing! I don't know how he does it!! I was coughing a lot at work and it gave me a headache and I felt miserable:( Ayla was the first one with a bad cough and she was put on Azithromycin for 5 days.

Please pray that his cough goes away soon and doesn't do any permanent damage to his lungs. Just yesterday the FDA approved expanded use of Kalydeco for 8 more mutations!! None of them are his mutations, but...this means they are getting closer and closer:) WOOHOO!!! We just need to keep his lungs as healthy as possible until they get it approved for him!!! http://www.cff.org/aboutCFFoundation/NewsEvents/2-21-FDA-Approves-Expanded-Use-of-Kalydeco-for-CF.cfm

I also just got some GREAT news from a fellow CF mom which totally made my day!!! So, despite everything that's going on with Lil' Chris' lungs right now, I have so much HOPE for his future:)

Thanks everyone,

Wednesday, January 15, 2014

CF Clinic Visit and Results 1/8/14 6 1/2 years old

Lil' Chris' 3 month check-up at the CF Clinic last Wed went GREAT!!!

Here is the comparison from his last visit on 9/18/13(you can always find this list on the right hand side of this blog;)...

-9/18/13 51.8lbs, 49 inches, 44% BMI, 94/82 PFT
-1/8/14 52.5lbs, 49.5 inches, 36% BMI, 95/88 PFT
As you can see, he gained some weight, got taller, his BMI went down(b/c he got taller), but his PFT's went UP!!! I was worried his PFT's were going to be bad, since he just got over a cough, but he did a GREAT JOB blowing until his face turned red!! I think that was the best he ever blew!!!
They did a throat culture and I already got the results back that it is "NORMAL" again!!!! WOOHOO!!!! I couldn't be happier!!! It was a year ago this month that he had cultured Pseudomonas(really bad bacteria). Since then, he has cultured "normal" which is AMAZING!!!! Pseudomonas is usually VERY hard to get rid of, so PRAISE GOD it stayed away!!!

He also got his annual chest x-rays done. He still needs to get his blood work done, but we have until his annual cf appointment on 6/4. He was supposed to get blood work done last year, but once school started it was hard to find the time to go and get it done. He gets blood work done every year and chest x-rays every other year.
They did see some more scarring in his lungs, which isn't good, but they said that is normal for a CFer:( I was really hoping to keep his lungs from scarring before a CURE came, but we do everything we are supposed to do and he only had like 1 bad cough in the last year, so idk.....
I asked the doctor about the chest pains he gets sometimes, and she said to try Tums. We usually just do his Albuterol puffer, but lately we have tried the Tums too. Not sure if either helps or not, b/c it usually only lasts about 5-10 min. The day after clinic, he had those chest pains about 4 or 5 times. We actually picked him up from school at noon. Not sure what is causing it. We thought maybe it's heartburn or something. His doctor doesn't think it is CF related. She thinks it might be Precordial Catch Syndrome(Texidor's Twinge). http://en.wikipedia.org/wiki/Precordial_catch_syndrome or http://www.precordialcatchsyndrome.org/causes-symptoms-and-treatments-for-precordial-pain/
Precordial Catch Syndrome (PCS), also known as Texidor's Twinge, is a common cause of chest pain in children and adolescents. It also occurs, though less frequently, in adults. PCS manifests itself as a very intense, sharp pain, typically at the left side of the chest, generally in the cartilage between the bones of the sternum and rib cage, which is worse when taking breaths. Patients often think that they are having a heart attack which causes them to panic. This pain typically lasts from 2 or 3 seconds to a few minutes, though, in some cases, they can persist for up to 30 minutes. The frequency of episodes varies from patient to patient; sometimes occurring daily with multiple episodes each day, or on a less frequent basis with weeks, months, or even years between episodes. On rare occasions, breathing in or out suddenly will cause a small popping or cracking sensation in the chest, which results in the pain going away. In most cases the pain is resolved quickly and completely, and medication is not needed for the pain to subside. There is no known treatment or cure for PCS.

His CF doctor said that most likely the Albuterol and Tums won't help it. It will just go away on it's own after a few minutes. She said there is no real concern and suggested that we get him checked by his Pediatrician to make sure nothing else is going on. So I will be making an apt soon if it continues. I hate to go to his Pediatricians during cold and flu season, but if this continues, we will go. Please pray that these pains never come back and that it's not something worse!!!
Thanks for all your continued prayers,
PS. I got to meet a fellow CF mom, Lesley, that I'm friends with on Facebook at clinic, and her son Cohen with CF. It's always nice chatting with someone else who "gets it" ;) Glad Cohen had a good visit too:)

Saturday, January 4, 2014

Bactrim Update / CVS

The Bactrim he started on Sun has def helped and his cough is pretty much all gone. YEA!!!

Only problem is...it was supposed to be for 14 days, but it ran out in only 6 days. So I called our CVS pharmacy and she said that the dr may have made a mistake in the math, so she called the dr and they said that he should be on it for 14 days. So now I have to go pick up another bottle. I'm so glad that our local CVS pharmacy was able to figure this out quickly on the weekend so that there was no lapse in giving him his Bactrim. Once I told the pharmacist that he has CF, she took the situation very seriously and figured it was a mistake in math on the script. I LOVE OUR CVS!!!

CVS is sooooo very easy to order refills too!! I just do it through an app on my phone:) It literally takes me less than a minute!! LOVE IT!! The app also lets me see when the last time I got a refill, what date I can refill it again, and when it expires!! This is GREAT, b/c then I can let the dr know if I see it's going to expire soon:) It's not good to have lapse in meds with CF. I try my hardest to stay on top of ordering all his meds and this CVS app makes it VERY simple! I wish we could get all his meds through CVS!! If you don't use CVS, I highly recommend it if you can!!

I'd say another fav part of CVS is that they have a drive-thru. I always hated going into Drug Mart to get his meds, b/c you never know what germs you might pick up. I still sanitize after touching the pen and clipboard thru drive-thru at CVS...you can never be too safe;)

Save the date for our next Great Strides Walk for CF on Sunday May 4th 2014 at 11am in Wooster!!!

Thanks for all the continued prayers! Keep praying for a normal throat culture, weight gain, and high PFT's this Wed at his 3 month CF check-up at the clinic!!!

Wednesday, January 1, 2014

Cough Update

Lil' Chris started 14 days of 3tsp 2x a day of Bactrim on Sunday 12/29/13 for his wet cough. This is the first antibiotic since last January when he was on Tobi and Cipro for Pseudomonas!!!! Praise the Lord he has had an AMAZING year despite having cultured Pseudomonas last Nov and Jan!!!! This is only his 4th cough in 2013. Not bad!! The other coughs weren't bad and went away without antibiotics, but this one kept getting worse, so I felt he needed a little help of an antibiotic. Luckily the medicine is working great and his cough has gotten much better!!

We are going to use his next cf clinic apt as a follow apt for this cough and antibiotic. It's on Jan 8th, so please pray for normal throat culture, good weight gain, and good PFT's!!!!

I hope everyone has a HAPPY, HEALTHY NEW YEAR!!!!! I'm praying 2014 is the year for a CURE for CF!!!! They are sooooo close!!! I'll be starting my fundraising soon to get to that CURE sooner!!! :)

PS. I LOVE my new laptop, honey!!! Thanks so much!!! :)

Wednesday, December 25, 2013


I hope everyone had a very Merry Christmas!!! We had the BEST Christmas EVER!!! The kids were very entertaining, and I took pics and video until my phone couldn't take anymore:p LOL

Lil' Chris got the drums that he asked for and Ayla got her green Polly Pocket helicopter that she asked Santa for:) She was even soooo happy, that she cried tears of joy when she opened it!!! It was so adorable that it made me cry:)

As I reflect on the day, I'm feeling very blessed to have such a wonderful, happy, "healthy" family!! There are many CF families who spend holidays in the hospital very ill, but Lil' Chris has had a GREAT year until he got a cough and stuffy nose this past Friday. It has gotten worse each day, but we are doing extra Vest and Albuterol treatments to help get rid of it. He recently got a new Vest machine which is really good, b/c it pauses every so many minutes to help him learn to cough in between. This new feature has been very helpful since he got this cough. He has his next CF clinic apt on Jan 8th, so I'm really hoping and praying that he doesn't culture Pseudomonas or something worse.

I wanted to share some good news that a fellow CFer, Piper Beatty, got the call for her 2nd double lung transplant today!! It's a Christmas Miracle!! So happy for her and her family! They are in my thoughts and prayers, as well as the donor family. Please pray everything goes smoothly and she has a quick recovery.

I know it's been a while since I posted last, but you might be seeing me post more often now that my awesome hubby got me a new touchscreen laptop for Christmas!! WOOHOO!!! I LOVE IT!!!! THANKS SO MUCH HONEY!!!!!


Friday, October 25, 2013

1st Visit from the Tooth Fairy!!!

Guess who lost his first tooth at 6 years old???

He was sooo excited that the tooth fairy was coming, that he couldn't fall asleep!! :) LOL  Is it weird that Mommy couldn't sleep either just anticipating the look on his face when he found out the tooth fairy had come?!? LOL

Luckily his most recent favorite movie is The Tooth Fairy with The Rock:) He's been watching it over and over and over...I guess anticipating when HE was going to get a visit from the tooth fairy;) Lucky for us, on the movie the kid only got $1 from the tooth fairy, so when I asked Lil' Chris what he thought he was going to get, he said $1. I wasn't sure how much it should be these days, so I was glad for the movie;) LOL

Now the tooth next to that one is loose and also one of his top front teeth is loose too!! Looks like he may be asking Santa for his 2 front teeth this year;p LOL

Saturday, October 12, 2013

1st Grade Field Trip to Ramseyer Farms

 Cool tunnels to run thru and peak through the bubble:)
 Cool new slides:)
 Lil' Chris doing flips, and Ayla getting buried in the corn:)
 Lil' Chris' turn to get buried:)
 Lil' Chris' Wooster Christian School 1st Grade class
As you can see in the pics, the kids had a BLAST at his 1st grade field trip to Ramseyer Farms!! He has a great bunch of classmates this year:) I look forward to getting to know them and their parents better:)

Friday, October 11, 2013

Culture Result!! / Pulmozyme WORKS for Lil' Chris!!

We finally got his throat culture result back and it was NORMAL AGAIN!! THAT'S 3 TIMES IN A ROW!!! WOO HOO!!! This momma is sooooooo excited!!!

I'm hoping and praying he goes the whole school year with all normal culture results! He goes for check-ups at the CF Clinic every 3 months, so his next appointment is on 1/8/14. Last year it was the end of October that he had his worst culture result...Pseudomonas:( But I guess we successfully eradicated it, b/c now he has had 3 NORMAL cultures!! YEA!!

So for now, no new changes to his daily routine. He still....
-takes 8 pills every morning, 
-5 pills with every meal and snack, 
-we try to feed him as many calories as we can(I wish I could eat whatever I wanted! lol), 
-he does his Vest for 30 min in the morning before school and 30 min at night before bed, 
-and he does his nebulized medicine called Pulmozyme every night.

I just wanted to say that we really do appreciate all that you have donated over the past 6 years, b/c it really helps bring out new and better meds for all CFers!! I gotta tell you...Lil' Chris has been on Pulmozyme for over a year now(he started last July) and he has only had one bad cough!! THAT'S AMAZING!!! He used to get 4-5 bad coughs a year! He used to be on antibiotics all the time it seemed! In the last year, the only antibiotics he was on was Omnicef until they discovered he had Pseudomonas, then they switched him to TOBI and Cipro. He did this one month on and then one month off and he hasn't been on any antibiotics since...and NO BAD COUGHS SINCE!!! WOOHOO!!! THANK YOU PULMOZYME!!! What Pulmozyme does is, it thins the mucus so it can be cleared out of the lungs much easier. CFers get thick, sticky mucus that builds up in their lungs and can cause really bad bacterias, like Pseudomonas, to grow. It is usually very hard to get rid of too, so we got very lucky. 
During his reading homework, he said he could even read it with his eyes closed;p LOL!!! It was sooo funny, b/c he kept peeking;p LOL!!!

Thank you everyone who prays for Lil' Chris on a daily basis!! Keep the prayers coming that he never gets Pseudomonas or anything worse every again!!


Friday, October 4, 2013

New Vest and Travel Neb!!!!!

 Guess who got too big for his blue Vest?? He now is in a Child Large!! I can't believe it!!!!
He is shooting with his Army Gun. LOL
 This looks like a school pic :) LOL
  He said he wanted the "Army Vest" b/c Spencer goes to the Army:) I think he learned to pose from Spencer too;p LOL

 New travel nebulizer. We are renting it to see if we like it...we'll probably end up buying it. It's pretty cool and he likes that he can walk around during treatment time:) 1st time ever not being tied down during treatment time!! (he started the neb before putting the Vest on to test out his freedom;)
Here are some pics of him using the travel neb, disposable neb cups, and his Army Vest on vacation to DisneyWorld...:)
 Ayla wanted a pic too;)
 He liked putting his arm thru the tubing;p
I def recommend using disposable neb cups when on vacation!! They were soooo nice!! They came individually packed, we used them, and then just threw them away!! Soooo easy!! We didn't have to worry about how we were going to sterilize them and dry them. We will def be using those on every vacation going forward!!!

http://mustardrevolution.blogspot.com/2013/09/2-years-ago.html  Remember baby Chaia from 2 years ago when I posted about her and her rare genetic heart disease?? Well, guess what?? She is still fighting like a champ!! Check her blog to see her cute lil' face:)

More Disney pics coming soon:)

Friday, September 20, 2013

Annual CF Clinic Visit Result 9/18/13 6 yrs old

Lil' Chris had a GREAT annual CF clinic visit the other day!! He gained some weight and a whole inch!! He was so proud that he didn't have any tears or even get teary eyed for either his throat culture OR his Flu Shot!!! He couldn't wait to tell his little sister, esp since she was rubbing it in that she only got teary eyed for her last shot;p LOL!!!

His PFT's were good too. Since he is 6 now, he started a new kind of PFT that he will only do on his annual visits that includes doing an inhaled Albuterol treatment, then different types of PFT's. He did VERY well!! He picked up on what to do after being told only once! He would go thru the motions before she would even tell him what to do! I was impressed!!!

New PFT with the door closed and she would use a microphone to tell him what to do.

His doctor said his lungs sounded GREAT!! YEA!!! This was the first year that we did not need to do Chest X-rays. He will do them every other year now. He does need to get blood work done before the end of the year though and each year:( He did not like hearing that...luckily for him I had to go to work;p We were there for 4 HOURS as it was:(

Just for my records,...
On 5/8/13 his height, weight, BMI, and PFT's were...48", 47.8 lbs, 33%, 84/79.
On 9/18/13 his height, weight, BMI, and PFT's were...49", 51.8 lbs, 44%, 94/82!!! He is in the 90th percentile for height and the 75th percentile for weight!! WOOHOO for BIG improvements!!!

Please pray with us that his culture comes back "normal" again! The last 2 have been normal, so praying for that again...and every time:) I'll keep you posted.

He has been doing GREAT health wise!!! He had a cold 3 weeks ago, but it did not turn into a nasty cough like it used to, so we are going on 8 months with NO ANTIBIOTICS!!!YEA!!!!!

His next check up is on 1/8/14