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 Wooster Great Strides Walk is TODAY!!!

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

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

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


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

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

 Meet Aden...a new CF team:)

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

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

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

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

Here are the happenings for the walk tomorrow...

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

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

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:)

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

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M

Our Decision on Pulmozyme or HTS / CF Update

Hmmmm, I went to go blog today and it's all different!! They changed it on me! You should still see the same, but I think just the way to write on the blog is different now. Not sure if I like it, but I'll get used to it hopefully;-)


Anyway....Big news!!!!!

PULMOZYME IS IN THE HOUSE!!!!

 Shipped in this cooler/box on ice ice baby ;) lol

 The kids had lots of fun playing with the bubble wrap and dragging each other with the long one:) lol

These are REALLY loud when they step on them and pop them!!

So sad:'( I HATE that he's going to have to take this for the rest of his life, but if it helps him, it will all be well worth it!!! He will start this nebulized drug on May 16th which is his next CF clinic appt. Please pray he takes to it well and that it works for him, b/c if it doesn't then we'll have to try the Hypertonic Saline(HTS). Thru my research, I found both good and bad things about each Polmozyme and HTS. What it seemed to boil down to was that it just depends on the CFer. What might work great for one CFer might not work so well for another CFer. It was a Big decision to choose which one, but we are praying that we made the right decision and this Pulmozyme works miracles for him!

Below is the nubulizer machine. It's the MoblAire 150psi by Invacare, which I was told is the Best of the Best!! I don't have anything to compare it to since this is the first nebulizer Lil' Chris has had...so we'll take their word for it;-)

In other Big news.....Lil' Chris has reached over  

TWELVE HUNDRED HOURS

  on the Vest!!! And he mostly sits pretty good thru it, esp since we got the iPad2;) Thank You Kohl's!! :)
As for a CF Update on Lil' Chris...he is doing VERY well!! That last antibiotic finally kicked in and his cough went away!! PRAISE THE LORD!! Our 7 step treatment 3x a day plan worked!! YEA!! Thank you all soooo much for all your prayers! It's soooooo nice not hearing him have a wet cough anymore!! It's seems like it's been way too long since he has gone 100% without a wet cough! I am one happy momma...except Ayla has had a runny nose and a cough for the past week. I think it's just allergies, but I'm REALLY hoping and praying that Lil' Chris doesn't pick up her cough. I'm so glad that she has learned that it's important not to get Lil' Chris sick. She always makes sure she covers her mouth when she coughs, and she tells Lil' Chris when he wants to get close and play, "I don't want to get you siiiiiiiiick!" :)

Again, thanks for your continued prayers,
M

CF Update / CF Lungs vs Healthy Lungs

Just a quick update on Lil' Chris...He finished his 3 weeks of antibiotic, Bactrim, a few weeks ago and for the first couple of days his cough was gone! I was soooo excited!! Then he went back to school and came back home with a cough again;( Ughhhhhhh It was sounding wet, but now it seems to be getting better :) PRAISE THE LORD!!! I'm praying for no more coughs before his next CF clinic appt in May.

I called the CF clinic the other day about getting the nebulizer machine for the Pulmozyme or HTS(we still have not agreed on which one to do). We are going to start it after his next CF clinic appt so they can show us how to use it and clean it properly. They said that some have reactions to it, so they like to do the first treatment at the clinic....which is more than fine with me since I have never used one before. Growing up, me and my sisters were pretty healthy, and the only sicknesses that I can remember were strep throat and my sister had to get tubes in her ears....that's it, other than the common colds!!! Thank You Lord!!!

I know these nebs won't make his cough go away or make him never get another cough again....but it will hopefully help him cough up the mucus and get it out rather than staying in his lungs for more bad bacterias to latch onto it causing more problems. I just pray that he doesn't get any scarring in his lungs before we get a chance to start it. Hopefully this new nebulized med will help keep scarring at bay. If we can keep his lungs clear until a CURE is found...then we are golden! If not, then the scarring and irreversible lung damage will stay with him and affect him even if.....I'm sorry.....WHEN a CURE is found!!!

Here is a pic of a CF kids lungs with irreversible lung damage...you can see how cloudy it looks, that's scarring.
Here is a pic of healthy lungs that are clear...
We are so close to a CURE and we can't let Lil' Chris' lungs get like that first pic! We need that CURE NOW before it's too late!! That's why it's soooo important to donate today to help save not only Lil' Chris' lungs, but all 30,000 in the US and 70,000 children and young adults worldwide!! Click here to donate today!!

Thanks so much to all who have already donated!!! It means the world to us!!!
M

Pulmozyme Decision / New Prevacid Capsule

After much thought, research, and prayer, our decision is in about the Pulmozyme....kinda;) LOL

This past Monday, I had to call the CF clinic b/c they left me a voicemail that he could no longer get the Solutab Prevacid that he has been on for years. So, now he is on the capsule Prevacid. They are just like his enzymes except bigger and a different color. He takes one 15ml capsule each morning. He's such a trooper that he can take all 3 enzymes AND prevacid all at once with a drink!!!! If you look in the pic below, you can see the aqua color capsule next to his enzymes. I took this pic for his 2012 Great Strides Video(see at top of blog:) Won't you please donate today?? :)

Ok, back to that phone call... when I called the CF clinic, I asked for my fav nurse and I was sooooo glad she was there!!! After we got the Prevacid thing settled, I started asking her about the Pulmozyme. She told me all about it and gave me a website to look up with videos. Its just Pulmozyme.com. I looked it up and right away was very encouraged b/c I saw 3 fellow adult CFers that I knew...Ronnie and his wife Mandi Sharp from Run Sick Boy Run CF blog and who founded CysticLife.org...Emily Schaller the founder of Let's Rock CF and the "You Know" You Tube videos which are Ellen Degeneres-like shows about CF(they are AWESOME), and Isabel Stenzel Byrnes who has a twin sister with CF too and they wrote a book about CF called "The Power of Two" I can't wait to get my hands on it and read it, b/c those girls are Amazing!!! Also, Isabel told me that her movie should be coming to OH soon!!! YEA!!! So, needless to say, when I saw the CFers that I knew, I felt very comforted!! When I started watching the videos, I realized that I had already watched them before at some point! I watch lots of videos that people post, just in case I will need that info for Lil' Chris. I especially liked the "How Pulmozyme Works" video.

Alright, back to my call again...I WILL get to our decision eventually;-) LOL As I was talking to my fav nurse, she was telling me that Pulomozyme is more like a preventative medicine. It will help keep his mucus thinner so he can cough it up and out easier. She mentioned that Pulmozyme has been around for 15-16 years and it usually increases the FEV1. She went on to tell me that they usually start this around 5 years old and are on it for life. Now, I always knew that more treatments would eventually get added, b/c I know so many CFers around the world, esp adult CFers that do 3-4 hour treatments every morning and night...but I guess I was thinking it would happen later on since he is doing so well, not in just a few months!! YIKES!!! She said it's not very effective if it is used just when he has a cough. They have seen better results in long term use. This med may prevent a lung infection, a hospital stay or many, and will hopefully help his cough get better b/c it will make him cough more to get it out.

I asked her about HTS or Hypertonic Saline which is very similar and I know a lot of CFers on it, some even do both Pulmozyme and HTS! HTS has only been around for the last 5-6 years. It does not have to be refrigerated like Pulmozyme does, and it is more natural. HTS is also cheaper. It draws more water into the airways and makes it easier to cough out the mucus. Pulmozyme is approved my FDA and works to thin mucus so people can cough it out easier. Fortunately, it looks like our insurances will cover it...THANK YOU LORD, b/c Pulmozyme is $2,000 for a 30 day supply!!!

CFF.org has some great info on both, so click these links or any of the color links above to learn more...
Pulmozyme-http://www.cff.org/treatments/Therapies/Respiratory/Pulmozyme/
HTS-http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

So, as I was talking to the nurse, I was telling her about my rough experience at my last visit. (BTW, thank to my fellow CF moms who helped me get through that rough time by sharing your stories with me:) She apologized and offered to get a second opinion from another doctor, who is the director of our CF clinic as well. He suggested one more week of Bactrim to see if his cough will clear up completely(he has one more day left and he isn't coughing, but when I ask him to cough, you can still hear that it is a little bit wet). He also didn't think that Lil' Chris needed to go on the Pulmozyme right away. He suggested that we do some research on it, and come back to our next visit in 3 months with all the questions we have about Pulmozyme and HTS and ask our doctor. His next visit is on May 16th and I've already got a list started...I LOVE the list app on my phone;)

Since talking to this nice nurse, it's seems as though if we want to keep Lil' Chris "healthy", then we are going to have to start one of these chronic medications soon. He will continue his Vest as usual and will do this new treatment either before or during his Vest either in the morning or at night. I can't believe he has been on his Vest for over 1,100 HOURS!!! My husband and I have a BIG decision as to which one to go with. I'm kinda thinking Pulmozyme, and Chris is kinda thinking HTS. Which one is better in the long run...that is the big question!?!?

Chris and I were trying to decide whether to start him on it in May, or wait til his next appointment in August, when he'll be 5 years old, since it has only been tested in 5 year olds and up. Actually, the CF Foundation recommends it in 6 year olds and up, but if we wait too long, he could possible get irreversible lung damage....we DEF don't want that!!! I say we start it in May, that way he will have a couple of months to get used to it and get into a routine before he starts Kindergarten in August....YIKES KINDERGARTEN!!!! That's a whole nother story;-) LOL

Although it is disheartening to add one more chronic treatment to his daily life at such a young age....this is NOT the end!!! There are new drugs in the pipeline that are tackling the basic defect of CF. I've talked about them before, but we are getting closer and closer now! Kalydeco (previously known as VX-770) is a new oral medication that was approved by the FDA on January 31, 2012 for people with CF ages 6 and older with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. Although this won't help Lil' Chris yet, b/c his CF genes are Double Delta F508, doesn't mean that there is no hope. They are doing test now on DDF508 patients to figure out a way to get it to work for them too:) They say possibly within the next 5-10 years!!! THIS COULD BE THE CURE THAT WE HAVE BEEN PRAYING FOR AND RAISING MONEY FOR!!!!!

So what does this mean?? We need to keep praying and keep raising money so they can do their research and GET US THAT CURE!!!! This past weekend was my birthday weekend and I decided that the best present possible, would be donations for A CURE for Lil' Chris and all with CF!! So, many many many thanks to Nancy & Al, my Aunt Mar, my Dad, Mandi W, and Melissa V for all donating in honor of my birthday and it truly was my BEST birthday EVER...not b/c we went skiing or went to see Monster Jam(that was pretty cool seeing the big trucks up close tho;)...it was the $440 donated by you guys that is going to help save my son's life some day!!!!!!

So PLEASE CONSIDER DONATING TODAY EVERY SECOND COUNTS...click this link http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks for being so patient with me in our decision on Pulmozyme and keep praying for a CURE!
M
PS. His throat culture results was Staph Areus sensitive to Oxycillin(MSSA) his usual, so YEA FOR NO NEW BAD BACTERIAS!!!! PRAISE THE LORD!!!

Why I Fundraise / CF Update / CiCi's CF Fundraiser Results

My last CF fundraiser at CiCi's Pizza went VERY WELL!!! It was a FANTASTIC night and a lot of fun!! We raffled off 2 tickets to an Indians game of your choice, and it was a BIG hit!! We normally raise around $100-$150 in the raffle, but this time we raised $230!!! BIG THANKS to my awesome Kohl's associates who helped us raise another $500!!!......Rebecca, Jill, Sharon, and Patty!!! Thank you girls, you all ROCK!!!

That puts us at $3,000 raised from Kohl's so far this year!! Thank you KOHL'S!!!! (for some reason they are not showing on my Great Strides page, but they are there;) So all together with the 10% from the receipts, the total for that night will probably be around...$800!!! WOOHOO!!!! That's awesome!!!

Thank you so much to all who donated or bought tickets!!! There were some very generous people who threw $10 or $20 bills in the donation jar and didn't even want any raffle tickets! I'm always amazed by such generous people! BIG thank you to the winner of the raffle as well!! I won't mention her name since I didn't ask her if I could, but I was glad she won, b/c she bought the most tickets...$20 worth!! CONGRATS on winning if your reading this;-)

What made the night even better was I met a couple of people who knew somebody with Cystic Fibrosis! One told me of a friend or relative(I can't remember now, I want to say she was her niece;) that was in her 20's with CF and had 2 kids and was doing well. She had a little bit of a hard time with the pregnancies, but that's to be expected. Another told me of her friend, who I believe was in her 20's as well, who was also doing well. Stories like these give me hope for Lil' Chris' future:) Thank you ladies for sharing your stories with me and for your donations!!

As for an update on Lil' Chris....he is doing well. He still has that wet cough, but it's not as often as it was. I'm praying it goes away before needing an antibiotic. I'm always cautious to put him on an antibiotic if he doesn't need it b/c the more antibiotics he takes or is on, the sooner his body will start to reject them. There is only so many antibiotics or drugs, and once he becomes resistant to them all.....well, that's when he will get more and more lung infections and irreversible lung damage. The next step would be a double lung transplant. Then starts the waiting game and all the questions...would he get the new lungs in time?? Would his body reject the new lungs?? Even with new lungs, he will always have CF.

Many CF families can relate to this thinking. We all know it's a POSSIBILITY for their future. All we can do is have faith, hope, and trust in God, and pray that a CURE if found SOON!!!!! I pray that God gives Chris and I the KNOWLEDGE of when to call and get him put on an antibiotic...or any big decisions that may be in his future.

When Lil' Chris was first born in 2007, they told us that the life expectancy for CFers was 36....today it is 37 1/4!!!! We are getting closer and closer to a CURE or a better control of this horrible genetic lung disease EVERYDAY!! Now you probably see why I do all the fundraising I do, why I ask/beg for donations, why I organize and put together a Great Strides walk every year...all for "A Cure 4 Lil' Chris" and ALL CFers!!! I'M GONNA DO ALL THAT I CAN, TO SEE A CURE IN LIL' CHRIS' LIFETIME...I HAVE TO!!!

My next CF fundraiser will be on Thurs June 30th from 5p-8p at CiCi's Pizza in Wooster. The raffle will be the same as last time, 2 Indians tickets to a game of your choice. Hope to see you there!!

Thanks again to everyone who has donated this year and in the past! We WILL see a CURE in Lil' Chris' lifetime!! I just know it!!
M
PS. If you haven't donated yet and would like to, click here:) Even though the walk is over, we'll always still take donations:) Thanks!

900 Hours on Vest / Wet Cough / Clinical Study on DF508

When we were at Disney, Lil' Chris reached the 900 hour mark on his Vest!! Way to Go Lil' Buddy!!! Also....he hit a milestone thanks to his cousin R! He can now unbuckle his Vest all by himself!!! YEA!!! Now he doesn't have to undo the velcro anymore and make it so it doesn't stick. Anyone with this Vest would know what I mean;-) lol

When we came back from our Disney trip, of course we all got sick ;( It was actually the day after Memorial Day. Big Chris, Ayla, and myself all caught a cold and had runny noses. Ayla had a cough too. Lil' Chris woke up that morning at 6am throwing up until about 10:30am off and on. We don't think he had any soy protein, but it seemed like it. Hopefully he's not allergic to something else too.

Anyway, he had a slight fever that day and just hung out on the couch for a couple of days(he's sleeping on the couch in the pic above...which NEVER usually happens), but no more throwing up. He didn't eat much either, but he would drink so that was good. After those couple of days he was fine!! He still has not caught our colds which is GREAT, but of course he woke up on his birthday with a weird sounding cough. Then he had a bad wet cough the whole car trip to Cedar Point. We almost turned around. Once we got to Cedar Point and he started going on the rides, he didn't cough much anymore:) Since then, he has been coughing off and on... still a wet cough. The last 2 mornings he has woken up early coughing a lot. Once he got up and moved around, he stopped coughing so much...just off and on again. I left a message on MyChart with the CF clinic letting them know that I would keep an eye on him this weekend and if it gets worse I'll call them on Monday. Meantime, we'll do more Vest treatments and Albuterol if he needs it. Please pray it gets better so he doesn't need an antibiotic. I'll keep you updated.

On a good note, there has been some more promising results in some of the clinical studies that could help Lil' Chris since he is a double Delta F508, the most common CF gene!! This could be HUGE for CFers!! Please pray this is the CURE or more CONTROL of CF we have been waiting for!! Click here for the whole article or read below....

Phase 2 Study of Two Potential CF Therapies — VX-770 and VX-809 — Shows Promising Results in Patients with Most Common Mutation

June 9, 2011

Vertex Pharmaceuticals Incorporated and the Cystic Fibrosis Foundation today announced promising results from an ongoing Phase 2 study evaluating combinations of VX-770 and VX-809, potential medicines designed to treat the defective protein that causes cystic fibrosis.

The study enrolled 62 people with two copies of the most common CF mutation, known as Delta F508. The trial lasted three weeks. Participants took VX-809 for two weeks, and VX-809 and VX-770 together for a third week.

Patients who took the drug regimen showed a positive change in sweat chloride levels. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The findings suggest that VX-809 and VX-770 together improve function of the defective CF protein, known as CFTR.

“The results of this study represent a milestone in our efforts to expand the use of small molecules to attack the root cause of cystic fibrosis in those with the most common defect,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “These data, while early, provide important new information that validates our approach and supports continued study of a combination-therapy approach to treating the basic defect of cystic fibrosis.”

The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

These positive results support further testing of VX-770 and VX-809 as a combination therapy. Vertex plans to initiate the second part of this Phase 2 study in the fourth quarter of 2011.

In people with the Delta F508 mutation, the defective protein does not move to its proper place at the cell surface. VX-809 is designed to help the protein reach the cell surface, while VX-770 aims to help the protein function more normally once it is at the cell surface.

The defective protein creates a cascade of symptoms, including a buildup of mucus in the airways and other complications that lead to lung damage and ultimately premature death.

The CF Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. In the 1950s, children with CF usually died before reaching elementary school. Today, people with CF live into their 30s and beyond.

Test Results / Cure to the Common Cold???

Here are the results from Lil' Chris' chest x-ray, blood work, and throat culture from last month and what the dr said about them...

-Chest x-ray came back normal. YEA!!! :)

- vitamin D level is normal- "this is great and hard to do in the winter" the dr. said :) I guess the Coromega Omega3+Vitamin D and the gummy Vitamin D's I have been giving him this winter really helped!! We are going to continue to give the kids these year round since the whole house went ALL WINTER WITH NO COLDS!!! Can you believe it??? This was a first!! My husband and I had a sore throat at one point, and I remember feeling sick one day, but completely fine the next, so I guess it was just allergies, but THAT WAS IT!! Have we found the CURE to the COMMON COLD??? My Dad was the one who told me about Vitamin D and I guess he was right!! Maybe it IS the cure to the common cold!!! "THANKS SO MUCH DAD!!! It's soooo important to keep Lil' Chris as healthy as possible and your knowledge on Vitamins has helped him soooo much over the last 3 1/2 years of his life!! Between all the Vitamins you gave me to take when I was pregnant with him, and all the Vitamins you suggest he take like the Omega 3 and Vitamin D and Vitamin C's, AND with the AWESOME air purifier you gave us, and your knowledge on how important exercise is to the lungs, and not to mention your awesome donations to the CFF....I honestly believe you have single handily helped save and extended my son's life!!! I will never be able to repay you!! All this combined is the greatest gift you could ever give me....a "healthy" Cystic Fibrosis son!! I LOVE YOU, DADDY!! YOU ARE THE BEST DAD IN THE WHOLE WIDE WORLD!!!!!"

- allergy testing: "Looking at his results, the only thing that probably causes a problem, or is high enough to consider abnormal, is cats or cat dander. I would still avoid broccoli (that lab is a special send-out) since after you have a reaction, the next reaction can be more severe."

- GGT- "this is a test of liver health, as are some other tests that were sent (AST, ALT). His GGT is mildly elevated(his GGT=50 and standard range is between 3 - 22), and something we will likely keep an eye on over time, but nothing to act upon right now." ;-( I'll definitely be asking about this at our annual visit!

-Throat culture- sensitive staph aureus like the last few times. YEA!! No big bad bacteria!!! Thank you Lord, b/c Nathan, my nephew, is coming in a couple of weeks and if Lil' Chris had a bad bacteria, then they wouldn't be able to be around each other since Nathan has Leukemia.

We will go over everything in detail at his annual visit next month, so I'll let you know more then. As for an update on Lil' Chris...he continues to do GREAT!!! He amazes me everyday when I look at him and think about how much worse it could be right now. I'm praying, praying, praying that a CURE will be found before he gets worse!! The donations have been rolling in, so that gives me HOPE:) Thank you to all who have donated so far!! It literally means the world to our family!! If you haven't donated yet, but would like to, click here to make a difference today!!

Thank you for all your prayers and keep them coming!! :)

M

Learn about VX770 & VX809 / Walk Update

If you want to learn more about the new drugs VX770 and VX809, then click on Lungs Behaving Badly to go to another CF moms blog who did a GREAT JOB explaining it! Gemma has a daughter named Sophie who is a couple months older than Lil' Chris and has Cystic Fibrosis and Tracheo-Oesophageal Fistula and Oesophageal Atresia. She is just adorable!! Gemma always leaves me great encouraging comments on this blog, so I just adore her too:)

I hope you check it out....these drugs are the future of CF and they are the reason I do all my fundraising...plus....Gemma has a GREAT blog:)


On a Great Strides Walk update... I got a couple of call backs today and we now have Frito Lays chips and 10 bags of ice from Speedway all donated!! YEA!!!

Here's what the kids like to play with...(remind me again why I bother buying toys???;-) LOL





Have a GREAT day!!

M

Over 700 Hours on the Vest!!! / CysticLife=Cool Stuff:)

I've been so busy lately, that I didn't realize that Lil' Chris had surpassed the 700 mark!! He pushed the button by accident on the Vest machine yesterday and I was shocked to see 715 Hours!! Time flies, even when it's spent on a shaking Vest 1 hour EVERY day!!

In the pics above, you can see that the velcro straps are tight again! YEA!! So glad we got this 2nd blue Vest! The velcro on it is WAY better!! Plus, it's nice to have a second one for when we wash this one;)

As for a CF Update...Lil' Chris is doing GREAT!! PRAISE GOD!! I was just looking at his cold/cough/antibiotic lists on the right hand side of this blog and noticed that he is due for another cough soon and antibiotic...well, at least that's how it seems to have been going this whole year...every other month he has been on an antibiotic for a bad cough. We are trying REALLY hard to hopefully skip this month;) We went to Vitamin World and bought more chewable Vitamin C's (500mg's) and a new Omega 3. This new one has Vitamin D in it too which is GREAT for trying to prevent colds, so I'm told;-)

We weren't sure if the kids would like the pineapple that they added to this new one, but we bought it anyway and they LOVE it!! They each get one Omega 3+D and one Vitamin C every day to help keep the sniffles away;) Why? Because every time Lil' Chris gets a cold, he ends up with a bad cough, which ends up with antibiotics;( So we gotta keep those colds AWAY!! I was SO glad when one of our sitters told me that she had a cold a few days before she was supposed to come, so that I could find someone else. We LOVE our sitters...they "GET IT"!! :)

Lil' Chris' next CF clinic appointment is on Dec 15th. Please pray that he stays as healthy as possible and that all of us stay as healthy as possible since it seems like once one of us gets sick...ALL of us get sick!! Everyone at work can attest that I always carry my sanitizer;-)Mommy's gotta stay healthy to keep her boy healthy:-) I LOVE YOU LIL' CHRIS!!!!!!!!

Make video montages at www.OneTrueMedia.com

Hey, do you guys remember me talking about how AWESOME CysticLife.org is?? Well, it's hard to believe that it's been almost a whole year that Ronnie and Mandi and their friends started CL!! They are doing something fun for their birthday, so here it is in Ronnie's words.... "It's time for the 2011 MEMBERSHIP DRIVE and we're dreaming big. We want 2011 new members to join CysticLife.org by January 11, 2011 (our first birthday). THIS WEEK'S GIVEAWAY TO NEW MEMBERS: Everyone that joins before 11/22 will be entered to win an iPod Shuffle. (Also, don't forget that everyone that joins during the drive will be entered to win an iPad!!) Join TODAY!!" http://www.CysticLife.org/ (Remember...you don't have to have CF or be a CF mom like myself to join CL. It can be ANYONE!! I love CL, b/c I know that there is always a place I can go to if I have ANY questions about CF or just want to learn more about CF!!)

CysticLife is also up for a Pixel award, isn't that sooooo cool?!?! Please vote and share this with anyone and everyone you know. How cool would it be for CL to win a web award? You can vote everyday!! http://www.pixelawards.com/nom_win_2010.php#Blogs VOTE VOTE VOTE!!

Thanks for everything,

M

May is CF Awareness Month / Upcoming Fundraisers

Did you know that May is Cystic Fibrosis awareness month???

That's why so many CF walks are in May:)

Did you know that purple is the color for CF???

I have changed my fb profile pic to the one above just for the month of May. You should do the same to get more CF awareness out there:)

This May, I have 3 fundraisers going on...

1. For the WHOLE month of MAY, 10 different CiCi's Pizza in Northeast OH are doing Pin-Ups for Cystic Fibrosis. Donate $1 or more and put your name (or a CFer you know;) on a pin-up and CiCi's will display it on ther walls.
2. Wed May 12th at Wooster Applebee's(must have flyer) 5pm-8pm
3. Thurs May 27th at Wooster CiCi's Pizza from 4pm-8pm. Raffle will be for 2 FREE Indians tickets;)

I hope you can join us if you are in the area:)

Please help me spread the word too! Tell your friends, your family, and your neighbors:) Post it on Facebook, post it on your blog, email it...every little bit helps:)

Thanks everyone for all your support:)

M

PS. Lil' Chris' cough still isn't the greatest;( Hopefully this new antibiotic will start working soon. Please pray it doesn't turn into a lung infection.

Annual Clinic Visit Paperwork

Ughhhhhh...Lil' Chris' annual 2-3 hour CF clinic visit is coming up in June. I got the paperwork in the mail the other day, so I am busy filling out ALL the paperwork...I HATE paperwork!! Does EVERY clinic do this??? We have to fill it all out, send it in, and then they will review it, and then go over it with us at our annual appt. and tell us what we are doing good and what we are doing bad.

I have to fill out a "Parent Questionnaire For Annual Review," and then a "Food Questionnaire." They are a pain to fill out!! The food questionnaire is 6 pages long, asking everything under the sun about what he eats!! Lil' Chris DOESN'T EAT ANYTHING!!! I feel like the worst mother EVER!! I have to check "Never or less than once per month" on just about EVERYTHING!! They must think I'm the worst when they review it :( I can't force him to eat foods or try new things...trust me I've tried! Hopefully the visit will go smooth and they won't recommend him seeing a speech therapist again on how to learn how to eat different foods. He knows how, he's just stubborn like his dad...I mean me;-) LOL

When I'm done, I have to make an appt. to get his chest x-ray done and blood work done before our annual visit so they can review the results before our visit and then go over it with us. I hate it that he has to go through this EVERY year for the rest of his life!! Poor kid. This is nothing though...when he turns 6 he will have to also do a PFT(Pulmonary Function Test) and an Exercise Test, when he is 10 he will have to add a DEXA Scan(bone density test that looks at bone health), and an Oral Glucose Tolerance Test to screen for CF related diabetes. Just crazy what all these CFers have to go through when they get older. It is a progressive disease though! We knew that from the beginning.

I probably sound very grumpy, but I'm not. It's just......all this stuff is a reminder that he has CF. CF moms, do you know what I mean? It's almost like you get into your routine of all the daily meds, Vest treatments, extra calorie foods, and even the quarterly CF clinic visits...that you almost forget about CF, b/c you are so used to it all! But then when you get this packet in the mail once a year....it's like a slap in the face!! It's a reminder that your kid isn't like every other kid. It's like the clinic is saying to you "Hey, don't forget...your kid DOES have Cystic Fibrosis, a DEADLY disease, and we need to keep a close eye on him!!" Wow, I do sound grumpy;) LOL I just hate the reminder, I guess. We try to live as normal as possible, and not let CF control what we do and when we do it.

I have to say, all these tests, paperwork, and annual clinic visits are great though...they help the doctors to stay on top of the disease. I don't want to think about what CF would be like without them!
M
PS. Lil' Chris is doing GREAT!! No colds or coughs!! Hooray!! Sorry for sounding so grumpy today;)

Tumbleweed Fundraiser for Cystic Fibrosis

This Tuesday, March 9th we are doing a fundraiser at the Tumbleweed Restaurant in Wooster to help raise money for a CURE for Cystic Fibrosis. All you need to do is click the link below, print the coupon, and then bring the coupon in to the Wooster Tumbleweed any time on Tuesday March 9th, and then 10% of your bill will go towards a CURE for Cystic Fibrosis.
Tumbleweed Coupon
For those who are new to my blog, Cystic Fibrosis(CF) is a life threatening, genetic disease of the lungs and digestive system. You can go to www.cff.org for more info. My 2 1/2 year old son, Lil' Chris, has CF and his life expectancy is only 37. Take a look at your child and imagine if he or she only had about 30-40 years to live or less. Would that be enough for you?? Of course not. That is why I do these fundraisers, because CF is not funded by the government like other diseases. It's up to the parents, family, and friends of those effected by CF to raise the MUCH needed money to fund VITAL research for better meds, and hopefully one day.....a CURE!!!!! We keep getting closer and closer to a cure, but it costs LOTS of money to develop these new drugs and test them before they can be approved by the FDA and then released.

Please help spread the word about Tumbleweed and all my fundraisers to help raise money and awareness for Cystic Fibrosis and Organ Donation. In the final days of those with CF, a double lung transplant can add 5-10 more years onto their lives, but this can't happen unless a donor is found. It's very important that everyone become a donor. All you have to do is get it marked on your driver's license and then you can save up to 7 peoples lives. So many young people die from CF just waiting and waiting and waiting for a matching donor. Please become an organ donor today and spread the word as to how important it is.

My next few fundraisers after Tumbleweed, are at CiCi's Pizza in Wooster on March 25th, April 22nd, and May 27th from 4pm-8pm. Come and join us and just put your receipt in the jar by the register and then 10% of your bill will go towards a CURE for Cystic Fibrosis. I will be at each one and we will be having a raffle each time too. Spread the word!!

We are also having a walk for Cystic Fibrosis on Saturday, May 1st at 9am if you would like to join us that would be GREAT!! It will be held at Hewitt Cowels Pavilion of Ida Sue School(by the soccer fields). The address is 266 Oldman Rd. in Wooster. Come join us for a day of fun, free food, and lots of prizes!!!

Thank you everyone for checking out my blog, and feel free to check back often to see more fundraisers for Cystic Fibrosis in town and to get updates on Lil' Chris:)
M

First Ever Great Strides Video!!

I finally made a Great Strides video for Lil' Chris!! Every year, I have seen everyone else make one, but I never did. I don't know if it was b/c I just never had the time, or if I just didn't want to type what I would have to type on the video. It makes me sick knowing that all us CF families not only have to deal with the stress of CF, but also have to raise the money to fund VITAL research to find a CURE and get better meds! Cystic Fibrosis is NOT governmentally funded like other diseases. It's up to US to make the difference in these children's lives! It's up to US to help them live a "normal" life! It's up to US to help them live longer!

Now do you understand why I do all my fundraising and always ask for your help in donating? We CAN make a difference!! We CAN help these kids live longer!! We CAN make CF stand for Cure Found!!

Please help by clicking here or by clicking on the Great Strides link on the upper right hand side of my blog, to donate today. Every penny counts! Thank you so much for all of your support over the last couple of years:)

Without further ado, here is my first Great Strides video...

Make an on-line slide show at www.OneTrueMedia.com

Thank you SOOOOOO much for watching and for donating! Please spread the word!
Thanks,
M