8th Annual CF Walk is this Sunday!!

Our 8th Annual Cystic Fibrosis Walk is THIS SUNDAY, May 7th at 266 Oldman Rd in Wooster!! Check in is at 11, and the walk begins at noon! It's free to go and there will be free food, snacks, drinks, balloon animals, fire truck, ambulance, police car possibly with K9's doing tricks, craft table, and more!! Let me know if you are coming!! It's fun for the whole family!! Please click this link to register to walk or donate/sponsor us to walk!!

BIG THANK YOU to those who have donated so far...Cara, Eva, Rafe, Danielle & Steven, Al & Nancy, Dad, Rachel, Marie & Sam, Dustin H, Mom, Stacy W, Martin & Jamie, & Dawn!! Thank you for helping Chris win the CF teddy bear and CF blanket too!! He LOVES them!! :)

http://fightcf.cff.org/goto/A_Cure_4_Chris 

I know I haven't posted in awhile, but like I always say...No news is good news!! :)

I haven't had time for much lately, because on 1/29/17, I got promoted to Store Manager of the Akron Kohl's!! :) I LOVE it and have a GREAT team!! Unfortunately, it doesn't leave me much time to blog, or do as much fundraising as I would like. Luckily my Mother-in-Law lives close and has been a tremendous help in getting things ready for our walk this Sunday!! Thanks Oma!! :)

As for an update on Chris, he has been doing well. He is up to 3 enzymes with every meal and snack now(he was at 2 with the new red pills). He also takes a chewable vitamin now instead of a gel one. He hates it, but we can't get the gel ones anymore:( He is still taking Prevacid daily and Claritin. His nose runs a lot during allergy season, so we are going to look into a different allergy medicine. I think he may have become immune to the Claritin because they keep him on it all year long and he has been taking it for a few years now.

He still does his Vest 30 minutes in the morning before school and 30 min at night before bed. Thankfully he has only had 1 bad cough this past year and only had to take an antibiotic once. I think it was right before Christmas. He still does well with his Pulmozyme neb every night. He even washes his neb cups now!! :)

The only area of concern right now, is that he has had to use his puffer(inhaler) more often recently because he gets these weird chest pains. We try to make it go away with manual CPT too. It usually seems to happen when he is at the soccer fields. So we have started giving him his puffer before we leave for practice or games now. He also has been getting a lot of stomachaches off and on. We mentioned it to the dr last time and she recommended he try new enzymes with his meals and snacks. They gave us one bottle to try, but it only has enough for one week. Not sure that's long enough to tell, but we are going to try it once school is out so the school doesn't get confused with which pills to give him. We are praying that this is the answer. Chris doesn't want to take them though, because he will have to take 5 of them instead of 3 with each meal and snack. I'll let you know how it goes.

He has his annual CF clinic appointment coming up in June where he gets his bloodwork done and is usually a 3-4 hour visit. Please pray all goes well and he gains weight and has a good PFT!!

Thanks again for all who donated and keep up with Chris' CF journey!! I'll try to post again in less than a year this time;p LOL

M

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...
http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=4810

THANK YOU SO MUCH TO THOSE WHO HAVE DONATED SO FAR...
DAD
DANIELLE
AUNT DONNA
DAWN

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!! :)
M

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!!

M

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!!

M

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!!

THANK YOU...
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!!
THANK YOU...
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
Dad
Aunt Donna and Uncle Jerry
David and Elizabeth Harcus
Mom
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!!
THANK YOU...
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
MCTV
Sign Design Wooster
Dominos
McDonald's
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!!
THANK YOU...
New Philly Kohl's for driving all the way to Wooster to our walk:)
Scott
Dorrice
Ramona
Sarah
Rachel P
Devin
Jolleen
Laura
Claire
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...
THANK YOU...
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!!!
M
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!!

Update on our Walk / Cat's Meow

 Front

Back

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!!
M

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!!!

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

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;)

BIG THANK YOU TO MY WONDERFUL HUSBAND FOR PUTTING THIS ALL TOGETHER ALL BY HIMSELF THIS YEAR, HE EVEN DID THE VOICE!! THANK YOU, HONEY!!!:)

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:)

BIG THANK YOU TO ALL WHO HAVE DONATED OR SIGNED UP TO WALK SO FAR!!! WE ALL GREATLY APPRECIATE THE SUPPORT!!!!
M
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;)

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,
M

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,
M

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,

M

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:)

CF Med List Expense/BCMH Approval!!!

GREAT NEWS!!!!!

WE GOT OUR APPROVAL LETTER IN THE MAIL FOR BCMH(Lil' Chris' secondary insurance)!!!! WHOO HOO!!!!!

It's a good thing too, b/c the same day we got his approval letter, we also got a statement in the mail saying that his $1,500 for 2 of his meds was paid for!! Praise the Lord!!!

I found this cool price list for most CF meds...https://www.cfservicespharmacy.com/ProductsandPrices/

Check it out to see how much you/your child's meds are without having to rummage thru all your bills and statements:)

Here is a breakdown of Lil' Chris' meds...

Enzymes=Creon 6,000= 5 with every meal, about 25 per day=$1,200 for 30 day supply

Prevacid=once daily=$250 for 30 day supply

Aquadeks=once daily=$42 for 30 day supply

Pulmozyme=inhaled once daily=$2,700 for 30 day supply

Albuterol Puffer= (was not listed)

Flonase=$102

When he cultures Pseudomonas, he has to take the following...

Cipro=$530 for 30 day supply

TOBI=twice daily for 28 days=$8,000 

TobiPodhaler=$8,000 (this just got approved, so he may take this next time he cultures Pseudomonas instead of TOBI, b/c it cuts treatment time down by about 40 minutes per day. I was surprised to see it costs the same as TOBI)

He also takes Claritin daily too, which is not listed b/c it's for his seasonal allergies. Not sure how much it is, but our insurance and BCMH covers that also thankfully. I think it's around $40.

So, our grand total for just one month without TOBI and Cipro=$4,334

Grand total with TOBI and Cipro=$12,864

Grand total for one YEAR without TOBI and Cipro=$52,008

Grand total for one year with TOBI and Cipro every other month=$103,188 

WOW!!! CYSTIC FIBROSIS IS EXPENSIVE!! 

SO THANKFUL FOR BCMH!!!

I don't know what we would do without it!!

THANK YOU BCMH and THANK YOU LORD FOR ANSWERED PRAYER!!!

My advice to other CF families is to get with your CF clinic's social worker to find out about any other financial assistance programs your area might have. BCMH is for my state, but your state may have something similar. Also, even if you think you may make too much and won't get approved...just apply anyways. It doesn't hurt anything by applying. You never know, you might get approved anyways, b/c of how serious a disease CF is! If you get denied one year, apply again each year. Like I said, it doesn't hurt to try...your effort will pay off once you get approved:)

Please pray that we continue to get approved each year as you can see the impact it has on our family.

Thanks,

M

PS. Lil' Chris is doing GREAT! NO COUGH!! THANK YOU JESUS!!

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!!

Big Thank You / New Treatment Coming / Update

BIG THANK YOU to....

My mom

Uncle Joe & Aunt Diana

Aunt Donna

Al S.

Audra & Jon

Thank You Guys So Much for your generous donations to A CURE for Lil' Chris and ALL who suffer daily from Cystic Fibrosis!!! We ALL appreciate it sooooooo much!!!

For those who would still like to donate, it's not too late, just click here. Remember, it's tax deductible!! :) I can't believe our walk in less than a month away!!!

They are getting soooo close to a CURE! Better meds keep coming, which is FANTASTIC!!! 

Here is a New Treatment Option for CF Patients coming soon...

FDA approves Novartis TOBI® Podhaler™for certain cystic fibrosis patients,
the first and only dry powder inhaled antibacterial in US!!

TOBI Podhaler is portable and requires no nebulizer, refrigeration or power source to deliver the medicine

TOBI Podhaler is indicated for certain cystic fibrosis (CF) patients with Pa and shortens treatment time by about 70% compared to nebulized TOBI®
Novartis announced on March 22, 2013 that the US Food and Drug Administration (FDA) has approved TOBI® Podhaler™ (tobramycin inhalation powder) 28 mg per capsule for the management of cystic fibrosis (CF) patients with Pseudomonas aeruginosa (Pa) bacteria in the lungs. Pa is the leading cause of loss of lung function in CF patients. TOBI Podhaler is anticipated to be available in the US in the second quarter of 2013.

For more information, please visit: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm345123.htm

This will be soooo GREAT for Lil' Chris if he can take it!! It will cut treatment time for TOBI from 25 min to a few min. in the morning and evening each!! WOW!!!!

As for an update on Lil' Chris, he is still doing VERY well!! No cough, no cold, no nothing!! We are so blessed to have to have so many people praying for him daily! We can't thank you all enough for all that you do for him!!

M

PS. BIG news coming soon ;)  

Walk/Commercial Update / Big Thank You's :)

The new commercial for our CF walk is in the mail to Clear Picture!!!! WOOHOO!!!

BIG THANK YOU to MCTV for helping spread the word about Cystic Fibrosis and our Great Strides Walk!!!

Pretty soon it will be playing all over Wooster and possibly Massillon!! They usually play it one month or so before our walk, and our walk is only a month and a half away!! I'm getting very excited!!! I can't wait!! This year is going to be GREAT!!!

We are going to have Domino's Pizza, McDonald's, Panera Bread bagels, fruit, water, soda, Pat Catan's craft table, different emergency vehicles for the kids to explore, and of course Dr. Dave and his wonderful balloon animals:) There will be lots of prizes given out too just for coming and joining our walk and donating:)

If you would like to sign up under our team "A Cure 4 Lil' Chris," just click here or click the Great Strides logo on the right side of this blog and click "Join My Team"!! It's that easy!! You can even make your own team and be a team leader if you want!!

If you don't live around here, but would like to still participate, you can go to cff.org, click the Great Strides link, and then search for a walk in your area!! We have many walks all over and you can even create a team for Lil' Chris and walk for him!! My sister-in-law does this in NJ, and my sister D does this in NC, but this year she is driving out to join our walk!! YEA!!! :)

Also, if you can't walk, but would like to donate, click here. I haven't ordered my thank you cards with Lil' Chris' pic on it yet, but I hope to today;) All who donate will receive one:) I know some who line them up on their fridge year after year and compare how big he has gotten and how many new treatments were added in just one year. Plus...he's a pretty cute kid...who wouldn't want his pic on their fridge;p Hee Hee!!! You can always mail me a check if you don't like using the computer:) Just make it out to Cystic Fibrosis Foundation. Email me for address.

And.... if you can't walk or don't have the money to donate right now, you could always ask your company if they would sponsor our walk(or you as a walker) or donate something for the prize giveaways at the walk! Also, you could send out a quick email to your whole address book and tell them of Lil' Chris' story and ask for donations. You can share my blog or my Great Strides link with them:) I know a few people who have raised a couple hundred dollars for Lil' Chris this way:)

BIG THANK YOU to Sprint Preferred Wireless in Wooster for being our Kick Off Sponsor!!  Thanks so much Kevin W. for contacting them and walking again this year!!:)

Another BIG THANK YOU to Wayne Saving Community Bank in Wooster for sponsoring our walk by being our Single Rose Sponsor!! Thanks so much Jeanette H. for setting that up and for walking this year!!:)

Big Thank You to all who bought something from my Thirty-One and Arbonne CF Fundraisers!! We GREATLY APPRECIATE IT!! I don't have the totals in yet, but when I do, I'll let you know how we did:) BIG THANK YOU to Carrie G. and Stephanie W. for donating their commission from the parties:) You girls ROCK!! If you would like to set a party with them, just let me know and I will get you their contact info:)

If you have any questions, please let me know!!
Thanks everyone,
M  

2013 CF Commercial / Fundraisers close this Thurs

Above is our 2013 commercial for our CF Great Strides Walk for a CURE for Cystic Fibrosis!!! I hope to double the amount of people and double the amount of money raised this year!!! If you haven't signed up to walk yet, click here to sign up under my team "A Cure 4 Lil' Chris," or you can make your own team and be a team leader! Let me know if you have any questions!


Here was last years commercial we made...


This year is our 4th annual walk for CF here in Wooster. I can't believe it's been that long already!! I still can't believe that Lil' Chris will be 6 years old one month after the walk!!! 50+ years ago, kids with CF never made it age 5 or 6...and here we are with a very energetic, happy, healthy little CF boy:) I can't thank those who donate and walk with us enough to show how much it really does mean to our family and all families that suffer from CF. THANK YOU, THANK YOU, THANK YOU!!!! WE ARE SOOOOO CLOSE TO A CURE!!! WE WILL GET THERE WITH YOUR HELP!!

If you can't walk with us, but would like to donate, click here to donate in honor of Lil' Chris:) Thank you sooooo much!!

So everyone knows, my 2 CF fundraisers from last week, Thirty-One party and Arbonne party, will remain open until this Thursday 3/14!! A percentage of every purchase will go towards a CURE for Cystic Fibrosis!! Here are the links...

To purchase some awesome Thirty-One bags, click this link...https://www.mythirtyone.com/shop/catalog.aspx?eventId=E2826354&from=DIRECTLINK

To purchase some awesome all natural hair, skin, make-up, and nutrition products, click this link and respond to the invite, put your name and email in, then click "shop online"...https://www.arbonne.com/cm/a/external/invitation/showInvitation?presentationId=720035&attend=N&language=en&country=US&guestId=4358453#

We are hoping to raise at least $250 from each party + the $500 from Kohl's for each party equals to $1500!! We CAN do it!!

Thanks,
M