My 1st CF Education Day!!

I just got back from my first CF Education Day at our CF Center. It was a lot of fun and they shared a lot of great info! It was so nice seeing and talking with other CF parents that I have met thru Facebook...Adam and Heather Longwell, Lisa Kibler, and now Loretta H:) 

There were also lots of vendors there giving away some great stuff!! I even got a pari cup(a nebulizer cup for TOBI)! Although I may not need it once they come out with the new Podhaler for TOBI this June!! WOOHOO!! This new TOBI will cut down treatment time by like 1,500 minutes a month!! That's AMAZING!!!!! I can't wait!!

I was so glad I got to go with Samantha, Aubrey's mom!! It's sooo nice to talk "in person"(not just fb;) about CF with someone who "gets it!" It makes me really want to start up CF Mom Meetings again;-) I used to set them up a long time ago, but then they turned into meetings about our walk. I think it would be nice for a few CF moms to get together and just talk CF once in awhile though:) I used to learn something new each time, and I always want to help anyone else out if I can.

They talked a lot about how the drug Kalydeco(which is basically a cure for those 4% of cfers who have G551D mutations) combined with the VX809 drug could be our possible cure for the majority of CFers within the next 10 years!!! ISN'T THAT AWESOME!!! Now we just gotta keep Lil' Chris as healthy as possible until then! They said that if the combo of those 2 drugs don't work out(they are currently in stage 3 clinical trials), then they already have some other drugs to try to combine with Kalydeco!!! That's great news too!

We are so close to a cure thanks to all your donations!!! Won't it make you feel soooo good to one day say..."I was a part of that cure:)" I don't know about you...but I can't wait til I can say those words!!! Cystic Fibrosis is the #1 genetic killer in children, and when we find a cure for it, it will be the only genetic disease that has a cure!!

If you would like to be a part of our cure for Cystic Fibrosis, click here to join my team to walk, or to sponsor me to walk for a cure on Sunday May 5th at 11am by Ida Sue School!!

 BIG THANK YOU to my cousin Charae & Paul, my Aunt Mar, my cousin Elizabeth, my neighbor Michelle P for spreading my blog on her fb wall and got a donation from her friend Jenn Conroy, and Barb N from Kohl's!!! I love that you guys will one day be able to say that you were a part of the CURE for Lil' Chris!!!! :) THANK YOU SOOOO MUCH FOR YOUR DONATIONS!!!! I finally got my cute thank you cards with Lil' Chris' pic on it and I will be mailing them out soon;-)

M
PS. I have lots of things to blog about, I just wish I had more time. The big news will be coming soon, I promise:)

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 ;)  

Thank You Al & Nancy!! / Gifts by Nancy

Just wanted to say a BIG THANK YOU to 

Al & Nancy S.

for donating to our GREAT STRIDES walk for a CURE for CYSTIC FIBROSIS for Lil' Chris and ALL who suffer from CF. They have both been HUGE supporters from day 1!! Their love and prayers mean soooo much!!

 

THANKS AL AND NANCY!!!

Nancy is sooo talented, when Lil' Chris was a baby, she made all his bibs and receiving blankets and they were perfect!! They were great for when he did his Vest too, b/c they could fit over top of it and cover most of it so if the shaking made him spit up, it didn't ruin his very expensive Vest.

 

 Here is a recent one of her burp cloth and famous bibs

She can do all kinds of stuff from personalized bibs to bags to towels!! You name it, she can do it!! She can make shirts with customized CF logos or sayings too! Message her if you have an idea & she will work with you! 

 

Here is a cute Easter shirt :)

 

Check out her site on facebook... https://www.facebook.com/GiftsByNancy

Thanks,

M

One Cough in 9 Months!!/BEST Culture Result!!

 Some pics of Lil' Chris doing his Pulmozyme and Vest before bed.

I was just looking back on my blog here, and I realized that Lil' Chris has only had ONE cough since he started the Pulmozyme daily!!! Pulmozyme helps thin the mucus. He used to get about 5 coughs a year, and now it has been 9 months and he has only had ONE cough!!! And that's including culturing Pseudomonas 2 times!

 AMAZING!!! THANK YOU JESUS!!!!

He used to always get coughs after a cold, but he hasn't the last few times, including his last cold on 3/7/13!! WooHoo!!

Oh, btw, his last culture came back.....

drum roll please..... 

NORMAL!!!!

WOOHOO!!! 

Thank you all for your prayers!!! Keep them coming, because they are working:)

 M

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

CF Fundraiser Tonight and Thurs!!

My Thirty-One CF fundraiser is TONIGHT!! Click below if you would like to order and have 25% go towards Cystic Fibrosis!! This months special is for EVERY $31 spent, you can get any tote for 50% off:)

https://www.mythirtyone.com/shop/catalog.aspx?eventId=E2826354&from=DIRECTLINK

This Thursday is my Arbonne CF Fundraiser, 6pm at my house! Let me know if you can make it!!

Thank you soooo much to those who have ordered already!! 

We GREATLY APPRECIATE EVERY ORDER!!!!

M

PS. Guess who went skiing???  Pics coming soon;)

Pseudo 3rd time in a row?????

 Eeeeek, is it Pseudo AGAIN????

I got a call from the CF nurse yesterday around 4:15pm, but of course I was at work and didn't hear her message until I had my dinner break. I hate it when that happens, b/c then I have to wait til the next day to call them back since it's after hours. So naturally, my husband and I think the worst...that he cultured Pseudomonas yet again:'( That seems to be the only time the CF nurses ever call us. 

Needless to say...I didn't get much sleep, b/c if he did culture Pseudo this 3rd time in a row, then he would have to do TOBI every other month. TOBI is really hard on all of us. Lil' Chris has to sit there for ONE WHOLE HOUR in the morning before school AND ONE WHOLE HOUR before bed, whereas we are used to just doing his Vest for 30 minutes in the AM and PM and we do the Pulmozyme the same time as the Vest in the evening, but adding TOBI was putting another 20-30 minutes onto his daily routine. We made it through the last 2 times he had to do it for 28 days each, but we were REALLY looking forward to not having to do it for awhile.

So, I got a call from the CF nurse just as I was about to take Lil' Chris to school this morning and I braced myself for the worst news possible......but.....she said that he DIDN'T culture Pseudomonas!!! WOOHOO!! Praise the Lord!! I was so excited!! I of course let Lil' Chris know the good news right away!! It didn't even phase him...all he kept thinking about was how he was taking his 50 words/flash cards that I made to show his teacher that he can read them:) He's such a laid back kid when it come to his CF! I've seen CF kids get so emotionally involved with their CF that it's so hard on the whole family, yet Lil' Chris just takes everything that's thrown at him like it's nothing. He just does what's best for himself! I love this kid:)

What this means, is that the Pseudo may have been successfully eradicated! There will be no changes in the rest of his meds and treatments. He will get another throat culture at his next 3 month check-up on 5/8/13. Then the worry game will begin again. Please keep Lil' Chris in your prayers that the Pseudo never comes back again! A CURE is right around the corner, he just needs to stay as healthy as possible until all us CF Mommy's and Daddy's can raise enough money to fund the much needed research for that CURE, since it is not funded by the government. Please help support CF and make a donation today or sign up to walk with us on 5/5/13!! Click here or you can always click the Great Strides link under the picture at the top and to the right of this blog:) Thanks so much!!

I had waited to update my Great Strides video for 2013, b/c I didn't know whether I was going to have to add that he does TOBI every other month or not, but now that I know his TOBI has been cancelled for next month until he gets another culture, I can post my finished product:) I must say, it's always hard updating this video each year, but I am super happy not to add TOBI in for every other month!! Praying next year there won't be any adds!! Here it is, my Great Strides Video for 2013, sorry it's mostly the same, but I like the back story, and I did add some new pics at the end:)....

Make a video - it's fun, easy and free!
www.onetruemedia.com

Don't forget...I have 2 CF fundraisers coming up next week. Thirty One Party on Tues March 5th at 6pm and Arbonne Party on Thurs March 7th at 6p, both at my house:) Let me know if you can make it and for directions!! You can still order even if you can't make it to the fundraiser...a percentage of each sale goes towards a CURE for Cystic Fibrosis!!! 
Thanks, 
M