Tumbleweed Fundraiser Today!!

Today is our first fundraiser at Tumbleweed Restaurant!! YEAAAA!! Wait....is it snowing again??? YES!!! Of course it is!! I'm having a fundraiser!! It always snows when I have a fundraiser!!

This is my 3rd fundraiser so far this year and it has snowed EVERY time!!! Today's snow is a lot worse than the other 2 fundraisers, so I'm not expecting much. A group of people from work were going to go have dinner, but then decided not to b/c of the snow. One girl gave me $10 and said "Here, I'm not going out in that snow!" I just laughed:) I can't blame anyone for not wanting to drive in this crazy snow. I didn't even want to, but I picked up my food "to go" on my way home from work today. While I was waiting for the girl to go get my food, I slipped one of the coupons to some people who were eating...LOL :) They'll never know;) LOL My hubby is working tonight and he is going to get dinner there tonight, so at least there will be 3 people who gave the coupon so 10% will go towards a cure:)

If it does stop snowing(doubtful since there is a snow advisory until 7pm tomorrow) and you would like a coupon to go to Tumbleweed... then click the link below...
Tumbleweed Coupon
Thank you to those who will risk your lives in this snow for Cystic Fibrosis!!
M
PS. I have added a new header pic and I added my Great Strides Video above the posts, so noone will miss it;-)

VX-809 Promising Results in Phase 2a Clinical Trials

I LOVE seeing good news about CF!! Today it has been posted all over facebook, email, other blogs, and news, that the VX-809 phase 2a clinical trials look very promising!! Click here to read about it on the CFF website.

Here is the email from Bob Beall:

Dear Friend,
This week, we gained important new ground in our work to advance the development of new cystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial. VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508. (This is what Lil' Chris has)

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.

VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.

Without your support, this milestone would simply not be possible. Your contributions help us build hope for the future and continue to advance vital cystic fibrosis research.

Thank you for your commitment to the fight against CF. Together, we are making a difference!

Sincerely,
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Click here if you want to see my first post about VX-809. I think I put in this post that the VX-809 was a pill, but I'm pretty sure it is inhaled 3 or 4 times a day. The VX-770 is a pill.

They are going to do another clinical trial in the second half of 2010 and that will be combining the VX-809 and the VX-770 in patients with Delta F508 (Lil' Chris' genes) I believe. Keep praying that this is the CURE!! Keep fundraising or donating, b/c these clinical trials are not cheap!! The Cystic Fibrosis Foundation needs our help to keep the research going to get to a CURE that is so close right now!! Click this link to donate today...http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6765&idUser=244059

Thank you all so much for all the money you have donated over the past 2 years!! As you can see, your money is being put to good use...we are getting closer and closer to a CURE!!!
Thanks again,
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

Fundraiser's Results & Upcoming Fundraiser's

This past week of fundraisers has been a lot of fun!!

I owe a BIG THANK YOU to:

Heather V.-2 CF children

Tina C.-1 CF child

Adam L.-1 CF child

Thank you guys soooooo much for spreading the word about my Friendly's fundraiser that was in your town. I would have done one in my town, but we don't have a Friendly's in my town anymore, and I like to try new fundraisers:) It was so nice meeting everyone's family:) I think it's great how they all came out and supported CF!

So, this is how it breaks down for my latest fundraisers:

CiCi's Pizza in Wooster:

1. $75 in tips, donations, and raffle for a basket of Bath and Body Works products(Thanks again Stacy A. and Amy;) BTW, Stacy A. was the one who won the raffle! She told me to keep the raffle prize and use it again next time. Isn't she the sweetest girl EVER!!! Oh yeah, we also had a super nice customer that said she didn't have any money on her, but that she would run to the ATM and come back...well, surprisingly she did!! She made it back right at 8:00pm when we were finishing up! Now how sweet is that?! A complete stranger! Wow, some people amaze me in their generosity!!


2. $25 in the 10% from the receipts...this is a total guess, since it takes a couple of weeks to get the check, but since it was so slow b/c of the snow, I think it is only going to be around $25.


3. $500 from Kohl's since I made the fundraiser an A-Team event. Thanks again Aileen, Stacy A., Stacie M., and Barb!!! You guys ROCK!!!


4. That makes the total $600!!! Not bad. If it wasn't for Kohl's, it would have only been $100.

Friendly's in Canton by the Belden Village Mall:

1. $210 in donations and for the raffle, which was a signed OSU basketball by the coach Thad Matta, an OSU t-shirt, OSU visor, and OSU flip-flops. I owe a BIG THANK YOU to HELEN from Kohl's who donated the autographed basketball. Thank you so much Helen!!! I was shocked as to how much I raised from the raffle!!


2. $130 in the percentage from the receipts. This again is a guess, but the manager did tell me that they did around $1200 that night, and since we get 10% for the first $1000 and then 15% for any over that, if I added correctly it should come to around $130. I'll let you know when I find out the true numbers for both events.


3. That makes the total $340!!! I wish I could have made it an A-Team event from Kohl's, but there was nothing for them to do. They (or maybe it's just this manager) had more rules than CiCi's. I couldn't buss tables for tips, or put my CF Facts papers on the tables, I couldn't walk around to the tables and tell them about CF or the raffle, and I couldn't even hand them papers about CF when they first walked in!! She said that they could pick up the paper if they wanted them. I handed them papers when they first came in anyways;-) LOL! The manager saw me, but didn't say anything. I think she knew I was a little upset about not being about to at least put my papers on the tables. I had told her that I do that at my other fundraisers. I think we still had a GREAT night!! It was even snowing that day and was bitter cold! The news said that it got down to -1 in Wooster that night! YIKES!! I was so happy for all the people that came out and supported CF even in the snow and cold! THANK YOU EVERYONE WHO DONATED!! For the raffle tickets, I sold them at $2=1 ticket, $5=4 tickets, and $10=10 tickets. I was surprised as to how many people bought the 10 tickets!! The winner of the raffle bought $30 worth and he was there b/c of Heather spreading the word, so again THANK YOU HEATHER!! I think he said that his wife works with Heather's sister. Luckily Heather's sister was still there and I was able to give it to her to give to Justin's wife to give to him:) It all worked out beautifully:) He was the one who gave the most money, so I was glad when the lil' girl pulled his name:)

Jeans 4 Genes

1. At Kohl's, my super nice boss let us do Jeans 4 Genes from October to January! Associates paid $3 to wear jeans or $2 to wear sneakers(tennis shoes as they call them around here;) or $5 for both. They got to do this on EVERY Monday, Tuesday, or Thursday for those months. Don't I have the BEST boss and the BEST associates!! I love my job!


2. Last I checked, we were up to $600!!! I'll find out the true total when I go back to work on Monday. I'll let you know.
   

All those fundraisers combined equals $1540!! YEA!!

Here is a list of my next fundraisers:

1. Tumbleweed-Tues Feb 9th all day, but must have coupon


2. CiCi's Pizza-Thurs Feb 25th 4pm-8pm


3. Tumbleweed-Tues March 9th all day, but must have coupon


4. CiCi's Pizza-Thurs March 25th 4pm-8pm


5. CiCi's Pizza-Thurs April 22nd 4pm-8pm


6. CiCi's Pizza-Thurs May 27th 4pm-8pm

I wouldn't mind doing another Friendly's one. I'll have to give them a call to set up another one. I have a number to try to get a golf fundraiser going, but I don't know much about golf, nor do I know anyone who plays golf. At our last Great Strides meeting, we talked about doing a spaghetti dinner to raise money. That might be fun:) If anybody has any other great ideas, please let me know:)

All in all it was a GREAT FUNdraiser week;) It wasn't much of a vacation for me though;) I was on vacation from Tues til Sun, but with getting ready for the fundraisers and doing them, it felt like I was working more than maxin and relaxin;-) LOL! I always get super stressed out for my first one, not nerves, just stressed making sure I have all my signs and stuff ready. Oh well, it was worth it for my Lil' Chris and for Jack & Allie, Nick, Kendall, and ALL CFer's!!!!

Which reminds me...please pray for Adam's 8 month old daughter with CF, Kendall. She had a fever of 104 the other day and hasn't been feeling well. Please lift her up in prayer.

I think that's everything for now, I'll let you know if I add any more fundraisers;)

M

Ayla's 1st Birthday! HAPPY BIRTHDAY, AYLA!!

I can't believe 1 year ago today, my sweet baby girl was born;) Boy did time fly by!! She was born on January 29th, 2009 at 2:52pm and was 7 lbs. 14 oz. and 19.5 inches long. I remember going into labor, like it was yesterday!(click on "January" below to read about it) She has been such a joy to have around. I love seeing her beautiful smile every day:) Yes, even at 6:30 in the morning;) lol!! Today she slept til 7:15am and woke up laughing;-) She is just too cute;) She must have known it was her birthday;)

Here is a montage from 1 year ago today until today:) The pics above were taken at Picture People, since Kiddie Kandids closed;( I think they did a GREAT job though! They even had us sign a paper so she could be one of their models...I guess to put up on their walls, though it would be cool if she shows up on one of their brochures or something;-)

Make an on-line slideshow at www.OneTrueMedia.com

Here are some things she has been up to:

1. She started to get her 5th tooth in the beginning of January, but now her 6th and 7th teeth are coming through too!! She has 4 right now, 2 on the top and 2 on the bottom, and now has one coming through on the bottom right and left side of her 2 bottom teeth and one coming through next to her upper left front tooth! She has another one that may start to come through soon too:)

2. She has been standing up at the couch and has been cruising around them for awhile. She can pull herself up to stand pretty much anywhere, as long as she has something to hold onto.

3. She drinks just whole milk now. She started refusing her formula a month ago.

4. She eats only table food. Thank God, no baby food for her! Saves us some money:) YEA!!

5. She drinks out of her cups now instead of bottles...PTL!! NO MORE BOTTLES!! YEA!!

6. She can wave, clap, make kissing sounds like "mwaaaa", make clicking sounds with her tongue, and give big wet kisses, and say "uh oh", "momma", "dadda", "night night", put a cell phone to her ear and says "hello", and "cheese" when you try to take her pic:) They are all so cute!

7. She likes to babble and make lots of noise. Sometimes she sings and dances to some of the songs on the shows she watches;)

8. She usually wakes up sometime between 6:30am and 8am, and goes to bed usually between 6pm and 7pm.

9. She usually only takes about 2 naps now, and still puts her right pointer finger in her mouth and plays with her hair with her left hand when she gets tired;-)

10. She still has yet to say no(shake her head no) to ANY food I have given her!! She eats EVERYTHING!! I LOVE it!! When she is done though, she'll definitely let you know!! She either won't let you come near her mouth, or she'll pull the last bite out of her mouth. Lil' Chris used to just spit it out onto his bib:)

11. She'll pretty much copy anything you do, like making faces or noises or hand motions or even coughing;)

12. A few weeks ago she started putting her arms up when she wanted you to pick her up:)

13. She still has NO interest in walking yet!

If you would like to take a look back to my posts when she was first born, click on the months below(remember, they go backwards by date)...

1. January posts - Going into labor posts and Ayla's birth pics:)

2. February posts - The posts before we found out if she had CF or not, and more pics:) BTW, she does not, PTL!!!

3. All Ayla posts - This is every post I ever mentioned Ayla. I found them by putting her name in the section on the right hand side of my blog called "Search My Blog for Anything." This is a great tool, and I encourage you all to use it if there is something you are looking to learn about:) It shows 4 posts at a time. Just click on the title to read them and then hit your back button to click the next one. Click the numbers at the bottom of the fourth post to see more.

HAPPY 1st BIRTHDAY, AYLA!!

WE LOVE YOU!

Love,

Momma, Dadda, & Lil' Chris

I hope you enjoyed a years worth of Ayla pics and posts;-)

M

PS. I'll post all about my fundraiser sometime this weekend:)

Nasal Polyps

Here is a great explanation of Nasal Polyps. I always wondered the whole story behind them. I always heard that a lot of CFer's get them. This may come in handy IF Lil' Chris ever gets them. I pray that he doesn't!!

I hope this helps you too and clears up any questions you might have had about them:)
M

CiCi's Fundraiser Went Great!!

Photo and video editing at www.OneTrueMedia.com

We had our first fundraiser of the year and it went great!! We had a lot of fun and raised some money for Cystic Fibrosis and got some awareness out to the public. Awareness is a big reason why I do these fundraisers. The more people who know about CF, the more money can be raised, and the closer we get to a CURE!!!

We raised about $600 thanks to my wonderful Kohl's team:)

Big THANK YOU to:

Aileen

Stacy A.

Barb

Stacy M.

Also a HUGE THANK YOU to Stacy A. for spreading the word about CF and the fundraiser and for her friend Amy who donated all the raffle prizes for the next 4 fundraisers!! THANK YOU, THANK YOU, THANK YOU!!

While we were at CiCi's doing the fundraiser, I talked to the manager about doing some more. So I set up some more dates....the last Thursday of Feb, March, April, and May. He said Thursday's are busier. Tonight(Tues) was slower than the times we did them last year, but it was very cold, windy, and snowy outside:( Hopefully Thursday nights will be better for us.

We had a Great Strides meeting before the fundraiser to go over some things for our walk coming up on May 1st. Thanks Erica and Mary for coming so we could plan for our big day in May:) I was happy to let them know that I raised $600 at Kohl's doing Jeans 4 Genes Days! Thank You To All My Wonderful, Generous Kohl's Associates!!!!! I also got Panera Bread to donate 100 bagels for our walk:) YEA!!!! The only other thing that I have done for the walk so far, is to get 2 radio stations announce it on-air closer to the walk date:) 94.1 and 104.5. Oh yeah, I also got our local TV company(Clear Picture) to put all my fundraisers and the walk on Channel 10 Community Notes:) I told them that I am planning on making another commercial for our CF walk too. It was a lot of work last year, so I better get started;0

Our next fundraiser is on Thursday 1/28 at Friendly's in Canton by the Belden Village Mall from 5pm-8pm. I can't wait, b/c this is my first time doing one at Friendly's:) I hope it goes well. If it does, then I might set up some more;) I'll let you know how it goes. Please keep spreading the word, b/c the more people, the more donations. Friendly's will donate 10% of EVERYONE'S bill from 5pm-8pm, and if we bring in over $1,000 in business(which the manager said isn't very hard), then they will donate 15% for every bill over that first $1,000!! YEA!!

M

CiCi's Pizza Fundraiser Tonight 4pm-8pm and Friendly's Fundraiser Thurs 5-8pm!!

Join us tonight(Jan 26th)

at

CiCi's Pizza in Wooster

and 10% of your bill

will go towards

a CURE

for

CYSTIC FIBROSIS!!

We will also be having a raffle:)

$1=1 ticket

or

$5=8 tickets

______________________________

Join us on Thursday(Jan 28th)

at Friendly's

in Canton by the mall

from 5pm-8pm

and up to 15% of your bill

will go towards

a CURE

for

CYSTIC FIBROSIS!!

There will be a raffle for a limited edition Ohio State basketball, signed by the Ohio State basketball coach, Thadd Matta!!

Please spread the word on your blog, facebook, or twitter to get as many people to come to these fundraisers for CF as possible!!

See you there;)

M

Lil' Chris Taking His Enzymes Whole with Juice!!

Make an on-line slideshow at www.OneTrueMedia.com

Here is the video of Lil' Chris at 2 1/2 years old taking his enzymes whole without applesauce and without a big straw!! YEA!!!

Here are the steps we took...
1. We started giving Lil' Chris one whole enzymes on top of a spoonful of applesauce, then started doing all 3 on one spoonful. We started this I think when he was about 1 1/2 years old. Before this, we would sprinkle them on top of the applesauce.
2. About 2-3 weeks ago (2 1/2 years old), I started letting HIM pick up the enzymes and place them on top of some applesauce and then feeding himself the enzymes. This taught him not to squeeze the enzyme or take it apart, and it got him to put it in his own mouth.
3. Last week I started the "Big Straw" method. I put the straw in a cup of milk and then pinched it at the top and put an enzyme in there and let him suck it up with the milk. He did ok with it. I would also let him put the enzymes in the straw. We started out with one, then started putting 2 in the straw at a time.
4. At this time, I started showing Lil' Chris how Mommy takes her pills(I have to take pills every time I eat too). I would tell him..."Look at Mommy take her pills" and then I would put my pills in my mouth and then take a drink. He watched every time and when I would swallow them and show him that they were gone, he would say "Good job, Mommy!"
5. After 2 days of the straw method, he started putting them in his own mouth and then would take a drink. A couple of times he would swallow them without any drink!! Only 2 times he kept it in his mouth too long and the lil' seeds came out. He quickly learned not to do that anymore. Now he does it like a pro!! Another thing I think that really helped him, was giving him lots of praise after each time he would do it right. I would give him a high five, a hug, a kiss, and I would tell him how proud I am of him. I think the first couple of times I might have jumped up and down with excitement;-) lol

I'm so proud of him every time I see him take his enzymes now:) It has made life soooooooo much easier. No hassle of the applesauce and no hassle of the big straw. We can now go out to eat somewhere and not have to worry about having applesauce, a spoon, or a big straw! I LOVE IT!!
M

Lil' Chris' BEST NEW MILESTONE EVER!!!! No Applesauce and now NO BIG STRAW!!

Today was so FANTASTIC!!!! Lil' Chris decided to surprise us....

This morning my husband talked him into picking up his enzymes and putting them into his mouth and THEN taking a drink!!! That's right....No applesauce for 2 days and now no applesauce AND NO BIG STRAW!!!! This kid amazes me everyday!! :) Praise the Lord!! I am in Heaven right now!!! My prayers have been answered! I couldn't be more happy and more proud of my boy!!

I have been waiting for this day ever since we starting feeding him spoonfuls of applesauce(with the enzymes sprinkled on top) when he was just 2 weeks old.

Yesterday he did a great job doing the "big straw" method, but was reluctant at times. Plus, I gotta admit...it was kinda a pain! I still think it was better than doing the applesauce, but my husband said he'd rather do the applesauce than the big straw. I told him we are NOT going back to the applesauce now. I guess that's why he decided to try to talk Lil' Chris into putting them into his mouth all by himself and then taking a drink. I have tried this many times off and on and he would NEVER do it. He would always spit it out. Well...my husband stood firm today and MADE him do it. It worked!! I think he started to realize that it wasn't so bad. He didn't cry or anything. Actually he took all 3 in a matter of a minute or 2!! My husband and I were SHOCKED!!

At his next meal, I stood firm and he took one, took a drink, took the 2nd one, took a drink, took the 3rd one, and took a drink! By dinner time he was taking TWO in a row and then taking a drink!! I was shocked! I only had to tell him once not to chew them. Oh yeah...and he started swallowing them BEFORE HE TOOK THE DRINK!! My jaw DROPPED!!

I can't tell you how much easier life is right now:) THANK YOU LORD!!! THANK YOU LORD!!! THANK YOU LORD!!!

M

Tumbleweed Coupon for Feb 9th and March 9th

On Tuesday February 9th and Tuesday March 9th, the Tumbleweed restaurant in Wooster has agreed to do a fundraiser for Cystic Fibrosis!! They will donate 10% of all customers bills ALL DAY LONG if they present the Tumbleweed coupon below!!

Just click the coupon below, print it, and bring it into the Wooster Tumbleweed on those days to get 10% of your bill to go towards "A CURE 4 Lil' Chris" and all those effected by CYSTIC FIBROSIS!!



Thank you so much and please SPREAD THE WORD!!!!!
M

Lil' Chris' BEST Milestone EVER!!!

Guess what Lil' Chris did today???

He swallowed his enzymes whole with MILK!!!!

I can't believe it!!! I was sooooo excited, I gave him a big hug and kiss and lots of high-5's:) I'm so proud of him!! 2 1/2 and taking his enzymes with liquids!! Hopefully we can keep this going. So far he did it for lunch AND dinner!! The real test will be if he will do it all day tomorrow;)

Lately I have been getting my question answered on this topic on www.CysticLife.org I was very grateful for all the responses I got. I didn't realize how many other moms feel the same as me and are going through the same thing! I hope it works for them too:)

How did I get him to take his enzymes without applesauce??
I took the advice from some new friends on www.CysticLife.org and some of my blog readers and tried the "big straw method!" I used a straw from McDonald's(their straws are really big and wide) and pinched the straw in the middle and put an enzyme in there and then told him to drink! He didn't get it on the first try, but it didn't take long before he swallowed it right down!! I was shocked!! He would NEVER put an enzyme in his mouth without applesauce or some kind of baby food before. (I think he didn't like how it would get kinda sticky once it got a little bit wet.) For the second enzyme that I tried with him, I pinched the straw closer to the top so it could come out easier. At first he was hesitant, b/c he could see it. Then he came around and tried it and it came right out and he swallowed it down like a pro!! What a big boy he is now!!

You have NO IDEA what this means for us!! NO MORE APPLESAUCE!!! YEA!! Oh darn...I just remember that we just ordered a ton of those applesauce pouches. Oh well, maybe Ayla will eat them;-) It's a good "healthy" snack for her and VERY easy on the go;) But YEA I'm still so happy no more applesauce!!

This means....
No more buying the big huge containers of applesauce.
No more spinning the big container open, turning it upside down and shaking it to get the last little bit out, pouring it into a little bowl, putting the enzymes on top, getting a spoon, and then WASHING it all for the next feeding. Most importantly....NO MORE DOING THIS 5 OR SO TIMES A DAY!!!!!!!!
No more worries if we are running low on applesauce.
No more worries if we forgot to bring applesauce with us when we go out.
No more worries if we forgot a spoon(with the pouches he didn't need a spoon which was nice).
No more ordering the applesauce pouches.
No more applesauce spilling in the diaper bag or anywhere, why?????...becaaaaause...

NO MORE APPLESAUCE!!!!!!!!!!!

Can you feel my excitement??? :) I'm sure other CF mom's can relate;)

So for now, we just have to make sure we always have a large straw with us;-) Next step....NO STRAW!!! He can do it!! He is one step closer now:)

I'll let you know how he does the next few days:)

BTW, I am now addicted to not only blogging and facebook, but www.cysticlife.org too:) I LOVE IT! If you are a CFer or a CF parent and you haven't checked it out yet...what are you waiting for??? I've learned so much in just a couple of days than I have in the past 2 1/2 years!! Click one of the blue links above and check it out TODAY!!
M

Throat Culture Result and New Things

Lil' Chris' throat culture results came in the mail today...drum roll please!!......

"NORMAL"

YEA!!! I'm sooooo happy!!! I thought he was going to culture something, since he was having that weird cough at the time. Praise the Lord he didn't!!!!

Lil' Chris has been doing great!! No cough or runny nose!! YEA!! He has been doing some new things lately too...

1. He has been sitting at the table like a big boy in his new booster seat.

2. He has been eating more food...PTL!!!!

3. He has been eating his applesauce and whole enzymes all by himself. Usually we would feed it to him, b/c he would just eat the applesauce and leave the enzymes in the bowl. Now he eats both all by himself!! One step closer to him swallowing them whole with water, I hope;)

4. He has been drinking from a cup...without a lid!!! He does a GREAT job with it too!! We probably could have started it a long time ago. I think he learned it from when I let him drink the left over water from the bowl when we do his Prevacid solutab.

5. He can also drink straight from a Danimal Yogurt! I just open it and give it to him!! So easy:)

6. He has started going on the potty when we go out! He tells us "Potty first?" I guess b/c that's what I usually say to him;-) LOL We've been using pull-up when we go out, but lately when we get home they are still dry b/c he asked to go on the potty and actually went! Now we can keep him in his undies when we go out!! YEA!!

7. He has also started going on the potty all by himself! We used to have to go in there with him to help him up on the seat or just to make sure he didn't pee all over when he stood up, but not anymore:)

8. He now sings to his favorite songs on his shows. He does hand motions too;-) I'll try to get it on video;) lol

I can't believe how big my lil' kiddos are getting!!!

Guess what Ayla's been doing??.......

You'll have to wait until her 1 year birthday post;-) LOL You thought I was going to tell you, didn't you??? LOL

Today we were going to get Ayla's one year pictures taken at Kiddie Kandids in Babies R Us, but then found out that all the Kiddie Kandids closed yesterday. The bank closed them all. I was soooo sad;( They used to take the best pics and you would walk away with your pics instead of having to wait 2 weeks or so and then have to go back and pick them up. Oh well, I guess we'll have to find another place now. Any suggestions???

Since we couldn't get her pics done, we went car seat shopping instead. I can't believe she will be one in a couple of weeks!!! We found 2 that we liked. One has the wind up(so you don't have to pull the strap) and one crappy cup holder, and the other one has the strap that you pull to tighten the harness and has 2 built in cup holders. They are both around the same price. Decisions, decisions...good thing we have a couple of weeks to decide;-) Which one do you think we should get?

M

CF Awareness Day & CysticLife.org

CF awareness day is today.. "EVERY BREATH COUNTS"!!

Please help find a cure for my son Lil' Chris and all CF patients.

Every Breath Counts... 3 + 60= 63!!

3=the number of different meds Lil' Chris takes EVERY day ...(not the number of times or amounts) 60= the minutes of Chest Physio Therapy he gets EVERY day with his Vest!

These numbers will only increase if a CURE is not found soon. Please click here to donate today. Money buys science, science buys a CURE!!!!

Make sure you stop by CysticLife.org today!! CysticLife finally went LIVE!! YEA!! Thank you to Ronnie and Mandi for all that you do for the CF community!! GREAT JOB!!

M

PS. The pic above was taken right after he fell face first in the snow...I know I'm mean...I took a pic before helping him up;0 lol

Fundraising Time

It's that time of year again...Yesterday I got my fundraising packet out and started making calls and sending emails. Our walk in on May 1st at 9am in Wooster at Ida Sue School. I can't believe how quickly it is approaching!

I called CiCi's Pizza to set up some "Dough Raisers" where 10% of the receipts will go towards a CURE for Cystic Fibrosis. I'm planning on doing one on Tues Jan 26th from 5pm-8pm and then one each month from now until May. I'm going to make them A-Team events where associates from Kohl's will come and help buss tables so that Kohl's will donate $500 each month.

I plan on calling to get CiCi's to do Pin-ups again where customers can donate $1 towards a cure when they check out and in return their name will go up on the wall. I might be able to get about 15 CiCi's to do them if all goes well:)

I called Friendly's to see if we could do a fundraiser there too. I just have to get all the paper work filled out and then set up a time and date. They donate 15% of all receipts!

It's also time to start getting things set up for our walk too. I emailed Panera Bread to see if they could donate any food for the day of the walk. Hopefully that works out and if not, maybe they could do Pin-ups to help raise money???

I've also been thinking about getting a head start on our commercial for our walk. I'll post it at the top of my blog when I get it finished and leave it there until the day of the walk, just like I did last year;)

I'll let you know more when I find out,
M
PS. Please share with me any other good fundraising ideas that have worked for you. I love doing something new;-)

CF Update & Stuffy Nose

Lil' Chris has been doing much better! Thank you everyone for all your prayers:) His cough is all gone, except he does cough sometimes when he is doing his Vest(that's not a bad thing though;) We are still waiting on his throat culture results.

My next dilemma...
For the last few days or maybe even a week now, his nose has been really stuffy. It isn't runny, just stuffy. He will blow for us, but it never seems to be clear. I'm not sure if it has anything to do with his CF or not. I know CFers are prone to get nose polyps, but I don't think that is what he is getting. Although he does have some bloody boogers once in awhile. Is this the start of getting nose polyps??? What are symptoms of nose polyps?? I've seen a pic of what they look like on someones blog or caringbridge site once(I think it was Aidan's), and I don't see those in Chris' nose. Maybe he just has a stuffy nose or maybe allergies, IDK. I wish it would go away though, b/c he can't breathe through is nose barely at all. His lips are getting so chapped, b/c he has to breathe through his mouth all day and night.

Any CFers or CF moms have any insight on this??
Thanks,
M

Ayla's First time in the Snow:)

I love this pic of him:)

Make video montages at www.OneTrueMedia.com

Yesterday we took this kids out in the snow for the first time this year;) It was Ayla's FIRST time in the snow!! YEA!!! She wasn't too sure about it. She barely moved the whole time...although that may have been b/c she was all bundled up;-) LOL "I can't put my arms down!" LOL She went on her first sled ride and her big brother got to pull her:) She almost got to make a snow angel...maybe next time. It's supposed to snow everyday until Sat or Sun. Hopefully we'll get to go out in the snow again tomorrow:)
M
PS. Still editing the Christmas pics:) Coming soon.

Top 9 of 2009 and Top 10 for 2010!!! Try it:)

Top 9 of 2009 that God has blessed us with...

1. Lil' Chris and another GREAT "HEALTHY" year!!!!

2. The quick and painless birth of my baby girl....Ayla Christi, who was born without Cystic Fibrosis:) YEA!!

3. The love from all my bloggy buddies the whole year through;) Thank you guys;-)

4. Lil' Chris getting potty trained(at least during the day;) and NO MORE BINKY!! YEA!!

5. Our wonderful house and cars with no breakdowns or accidents:)

6. Our jobs and our health.

7. All the fun things we got to do this year...Cedar Point twice, Geauga Lake, NJ Boardwalk, Maine, Camping, and of course Kalahari:) Lil' Chris loved every bit of them all;-)

8. Reconnecting with family and friends on Facebook:)

9. Raised $4,440 to help find a CURE for Cystic Fibrosis for my son and all CFers!

Top 10 for 2010 that I'd like to achieve...

1. Another "healthy" year for Lil' Chris with no nebulizers again.

2. No hospital stays or emergency visits.

3. Lil' Chris to swallow him enzymes all by himself without applesauce.

4. Lil' Chris to get potty trained at nap time and night time.

5. Lil' Chris to start using his big boy bed.

6. Ayla to get potty trained too;-) That would be nice...NO More Diapers EVER!!! :)

7. All of us to stay as healthy as possible.

8. For my husband or I to move up in our jobs or find better paying ones:)

9. To raise $5,000 or more for a CURE for Cystic Fibrosis!!!

10. And of course.......Go to DISNEY WORLD!!! YEA!!!

I think you should do the same that I did above! Give it a whirl! Then at the end of 2010 you can look back and see what you DID get accomplished from your list of "things to achieve";-) Have Fun:)

I hope everyone has a Happy, Safe, and HEALTHY 2010!!!

M

PS. Christmas pics are still being edited...coming soon;)

HAPPY NEW YEAR!!!

I hope everyone has a HAPPY, SAFE, AND HEALTHY NEW YEAR!!!

CF Clinic Visit 12/30/09 and Vest Hose Breaking

Look how big he is getting!!!

Make photo slide shows at www.OneTrueMedia.com

Thank you all so much for all your prayers. They definitely worked:)

To my surprise, Lil' Chris had a GREAT CF clinic visit today!!! YEA!!! After what happened on Monday, I really thought we were going to come on a nebulizer! But the doctor didn't even give him an antibiotic!! YEA!! He really is doing much better than he was on Monday. The doctor said he must have caught a virus or something. He may have even caught what I had and then what Ayla had...it just effected him differently. I remember being told from the first day he was diagnosed that just the common cold to us could mean a hospital stay for him. That is why I always carry my sanitizer at work, and why I wear my mask when I get sick.

I'm not sure what Lil' Chris weighed, I forgot to ask until the end, but we had to go b/c my hubby had to go to work right afterwards:( The doctor did say that his height was 36.5 inches and in the 56th percentile. His BMI was 54%, so I guess his weight must not have been too bad...YEA!!! They want CFers to be above 50%. His blood oxygen level was 97% and they like CFers to be above 96%, so that's good. The doctor said his lungs are as clear as a bell!!! I couldn't be more happy to hear those words;) He said overall, he is doing GREAT and that he doesn't want to change anything at this time:) YEA!!! Thank You Lord!!! He did say though, that if his cough gets worse than we should call and he will put him on an antibiotic right away. Our next clinic appt is in 3 months on March 31st. I'll let you know what the results of his throat culture is when I find out. Please pray that it comes back "normal".

Before the doctor came in, a lady came in to see how we are doing with the Vest. She asked a few questions and then I told her that one of the hoses has started to come apart. I barely got the words out of my mouth and she was saying that she would get new ones sent out right away! She said we don't have to worry about insurance covering it or anything. It's one of the perks to having the Vest...you can get anything replaced right away at no cost!! It's hard to explain how the hose started falling apart, so I took a lil' video of it...(CFers, let me know if this has ever happened to your Vest hoses too. There are no holes, just the rings started coming off)......

Make an on-line slideshow at www.OneTrueMedia.com

M

PS. Christmas pics are coming soon:) It took me 2 days to upload them all with my new 12.0 mega pixels camera;-) Now I just have to edit it and then I will post them.

Update on Lil' Chris' Breathing

Thank you everyone for your prayers. We greatly appreciate them:) Lil' Chris is better today, although I wasn't with him much last night or today b/c I had to work. He still sounds really weird when he coughs or talks, but at least he is talking today, b/c yesterday he would only whisper. He is playing more today too instead of just wanting to be rocked or held, so that is a good sign. It still sounds like he's got something in there though, but he can't get it out:( Boo!!

We still aren't sure exactly what's wrong. Maybe he has or had a sore throat, or maybe he got some yucky bacteria in his lil' lungs:( Ayla was coughing, so maybe he got it from her. IDK. I called our CF clinic(Akron Children's Hospital) yesterday and they just said to up his Vest to 3-4 times a day until his clinic visit Wednesday(tomorrow). Poor kid...that's TWO HOURS sitting still while a machine shakes his lil' body;(

The nurse on the phone said that it may be time to start nebulizer treatments(she said this last time he had a cough too;). I kinda hope we DON'T have to start these, b/c it's gonna make his treatment times WAY longer EVERYDAY for the rest of his LIFE!!! But...I kinda WANT to start them, b/c Lil' Chris is the only CFer I know that has never done any nebs .... and that makes me wonder, b/c I know A LOT of CFer's young and old.

I'll update you again tomorrow after our clinic appointment. Please pray that his throat culture comes back normal, that he doesn't need a neb, and if he does need a neb that he does well with it, and please pray that his weight it up(not too sure it's going to be, b/c the last couple of days he has not wanted to eat much at all;(

Thanks again for all your prayers,
M
PS. Thank you soooooo much Heather for calling me yesterday to help me figure out what was wrong with Lil' Chris. And thank you for all the great advice after listening to him over the phone!! You are a GREAT CF mom and I look up to you so much:) Thanks again:)

Breathing Weird

Please pray for Lil' Chris. He woke up at 12:30 in the morning yesterday with a weird sounding cough and then coughed off and on throughout the day. Then when he woke up this morning, he sounded REALLY bad! It seemed as though he was having a hard time breathing. We could hear weird noises every time he took a breath. I'm not sure if it is wheezing or not, b/c this is the first time he has ever done this. It was very unlike him not to get excited about the snow that had fallen throughout the night and all he wanted to do was be rocked for a while. He doesn't want to eat anything except his Danimal's which is good, b/c at least he is getting some yogurt into him. We did his Vest and he just wanted to sit on my lap the whole time instead of on the floor playing.

He has been so needy that I didn't have time to finish my post. He sounds a little bit better, so I have decided to go to work. I told the sitter to just call if he gets worse. Pray that he doesn't.
M
PS. I'll update again tomorrow.

"Ho Ho Ho, Merrrrrrry Christmas!"

MERRY CHRISTMAS EVERYONE!!

I hope your holidays are bright:)

I'll make sure to take lots of pics of Lil' Chris tearing into his presents, and lots of pics of Ayla's first Christmas:) Be looking for them soon:)

Have a safe and healthy Christmas Everyone,

M

PS. Every time Lil' Chris sees a Santa he says, "Ho Ho Ho, Merrrrrrrry Christmas!" Too cute:) I think I am more excited than Lil' Chris this year:) I just know he is going to have soooo much fun, and I can't wait to see the look on his face when he sees some of his presents;-)

CF Patient Registry

Click here to read an article that explains the "registry" of CF patients. I don't think I have ever talked about this before. I can remember the social worker telling us about this registry that they keep of all CF patients on our second visit to the CF clinic, right after he was diagnosed. I thought it was pretty cool that they keep track of everything since everyone is different and certain meds effect people differently. Plus it's good for knowing about possible clinical trials you are eligible for. They explain it much better, so just click the link above;) lol

We are so excited about Christmas this year!!! Only 2 more days!!! We gave Lil' Chris a gift early and he LOVED it!! Then he wanted more gifts! He kept saying..."More presents?? More presents??" It should be a lot of fun this year:) I bet he is going to tear into all of them in no time! This kid just puts a smile on my face EVERYDAY!!! With all that he goes thru, I don't know how he can be such a happy kid. I just love him SOOOOOO MUCH!!!

Praying for Phenny and Reilly who had to go to the hospital. Glad they can be home for Christmas:)

This is from Aidan's(a CFer in Kindergarten) mom on facebook.....Aidan's comment tonight totally out of the blue....."Christmas time is just so magical, mom. Wouldn't it be great if the magic took my CF away?" The one present he really wants and the one I can't give....yet....

If you want to get me or Lil' Chris a present for Christmas, you can donate to help find a CURE! Click here to donate:) Thank you sooooo much!!


Click here to see Santa's message to Lil' Chris:)
M
PS. My cold wasn't so bad and didn't last long, so thank you for all your prayers;-) Thankfully the kids never caught it:) YEA!! Gotta love hospital masks;)

400 Hours on the Vest/Important CF Stuff

Lil' Chris has reached 400 hours on his Vest! Crazy when you think that in the past 19 months, my son has sat still(or somewhat still;) for 400 hours while a vibrating vest shakes the mucus out of his lungs. Poor kid is only 2 1/2!!!! Looking at the pics, it's hard to believe that Lil' Chris was Ayla's age now when he first got his Vest!! I should dig up some of those pics on of these days:) This video was taken on Tues 12/15 when he reached 400 hours. At the end are a couple of pics and a video of him playing a balloon guitar he got from an elf at the mall...he LOVES guitars!!

Make photo slide shows at www.OneTrueMedia.com

Lil' Chris has a CF clinic appt on the 30th, so we are trying to get him to eat as much as possible to get his weight up, but it's hard when he refuses to eat anything;-( I can't wait until he grows out of this stage! I'll take any advice you may have for a very picky eater.

Both Lil' Chris and Ayla got their H1N1 booster shot last Wed. Ayla also got her Season flu booster shot too, then she had her regular check up...she weighs 21 lbs and 6 oz., and is 30 inches tall!!! My lil' piglet;-) She is in the 75th percentile for her weight and in the 90th percentile for her height!!! Our dr always laughs at me when my jaw drops every time I hear 90...I'm just not used to hearing 90, I don't think Lil' Chris was ever in the 90's for anything...I'll have to look at my records;-) I WISH I would hear 90 for Lil' Chris:) Someday, someday;)

Please say a prayer for Wesley's family. He passed away from Cystic Fibrosis yesterday and he was only 17. He got his wish...to know what it was like to breathe...he had new lungs for a year before he passed. Just breaks my heart. A double lung transplant isn't a cure. Click here to read Wesley's page.

Click here to read a very interesting article about how a CFer in the UK was saved by receiving "salvaged" lungs. Lungs that would have been unsuitable. This could be HUGE for CFers if this comes to the states!!!

Lastly, check out this new drug that could really help CFers as well...click here to read about aztreonam lysine for inhalation. The drug would offer a much-needed antibiotic alternative for cystic fibrosis patients who battle recurrent lung infections and often develop resistance to existing antibiotics. It is manufactured by Gilead and will fight against Pseudomonas Aeruginosa infections in the airways of Cystic Fibrosis patients. It has already been approved in both Europe & Australia under the name Cayston(R) and the US has been lagging behind in its approval. Our Cystic Fibrosis patients with Pseudomonas Aeruginosa are running out of antibiotic options to help fight infections in their lungs. Please email druginfo@fda.hhs.gov to help get this drug approved if you are a CFer or a caretaker of a CFer. Just send a short emial stating how much this could effect your life or child's life. Also copy the Commissioner of the FDA too margaret.hamburg@fda.hhs.gov and then bcc the CFF at publicpolicy@cff.org. Thanks so much for helping get this important drug approved as about 60% of people with Cystic Fibrosis have a chronic respiratory infection caused by the bacteria called Pseudomonas Aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas Aeruginosa is almost impossible to get rid of. Respiratory failure caused by this infection is often the ultimate cause of death in many people suffering from Cystic Fibrosis.

Until there is a CURE...
M
PS. I have to wear my hospital mask for the next few days, since I got a cold last night;-( Ughhhh!!! Please pray that the kids don't get sick too, esp Lil' Chris.

Updates on the Kiddos:)

Lil' Chris has been doing ok without his binky so far. We had a few rough times getting him to go down for a nap, but hopefully that will get better soon. What am I saying....it's been a NIGHTMARE!!!! Just kidding:) LOL Sometimes it can seem like that, but then other times he goes right down! He'll ask for his binky once, and then that's it!! He even did a GREAT job for the babysitter yesterday! He took a nap AND went to bed for her with hardly any problems! When he doesn't do good, he likes to play a game with us..."Potty! Potty!" Take him in there... "No potty." Put him back in bed..."Potty! Potty!" Take him in there..."No potty." He just keeps doing it over and over. He knows we are trying to potty train him, so I am hesitant to not put him on the potty when he says he has to go. This kid is just too smart!!! Any ideas for me before I go completely grey???? Or bald??? You know, before I pull all my hair out;-) LOL

In other news....he continues to do a GREAT job with potty training. We took the little potty out, so now he only uses the big potty. He still is not potty trained for nap and night time, but we'll get there eventually:)

I've been worried lately that Lil' Chris hasn't been eating enough. We have a CF clinic appt on the 30th and I don't want his weight to be down. We usually try to give him real food and then if he doesn't eat a lot, we give him some baby food. Well...I took him off of baby food for a few weeks and he lost THREE lbs!!! Food has always been a touchy subject when it came to Lil' Chris. We never tried to push or make him eat, b/c he will just gag and throw it up or we would be afraid of making eating time an unpleasant time. Eating is sooooo important for him that we didn't want to do that, but.....it has come to the point that nothing else is working, so we have no other choice but to be harder on him to eat the food that is put in front of him. If he won't eat it, we say "take 3 bites than you can have your yogurt." He always wants his Danimals or Go-Gurts. So far, we have been shocked that he will actually eat the 3 bites after a little bit of fighting. I figure that getting the food in his mouth will get him used to the taste and used to eating those kinds of foods. I'll keep you updated on how he progresses. Click here to see some weight gaining strategies if you need them too. Let me know if you have any ideas for me:)

Ayla has been crawling around EVERYWHERE!! She can even go side to side now and turn around:) She also can pull herself up on the couch so she is standing! Pretty soon she will be scooting herself around the couches:) Then she'll be walking and running ALL over!! She's so cute:) Oh yeah, she's been trying to climb the stairs!!! Won't be long now;)

She now says "night night" when she gets sleepy, claps when people clap on TV, claps when anyone says "Yea!", shakes her head "no" when someone says "no", shakes her head "yes" when someone says "yes", and is always standing up in her crib when we go in to get her;) She also has been eating so much more! She eats all the stage 3 foods and eats ALL the snacks that Lil' Chris eats! If I try to feed Lil' Chris something, she crawls over and starts whining until I give her some;-) Too funny! She eats it FASTER than him too! Even Chris and I can't eat something without her wanting some;-)

Ayla also likes to dance to music too;) Her brother definitely rubbed off on her;-)
M
PS. Do you like the new header pic??? More to come this month;-)

Miley Cyrus' tattoo says "Just Breathe"

Miley Cyrus got a tattoo that says..."Just Breathe" Yea! Finally some media about Cystic Fibrosis!! You go, Miley!!! Click these two links to read some articles about her and her new tattoo:)

http://www.examiner.com/x-11363-Dallas-TV-Examiner~y2009m12d6-Miley-Cyrus-tattoo-has-positive-meaning

http://www.buddytv.com/articles/hannah-montana/hannah-montana-why-miley-cyrus-33105.aspx

NO MORE BINKY!! YEA!!

Lil' Chris hit a HUGE milestone yesterday and last night! Yesterday, when I was putting him down for a nap I noticed that his binky was split down the middle! I thought..."YES! Perfect time to get rid of the binky... FINALLY!" So I explained to him that his binky is broken and he can't use it anymore. So we threw it in the trash and I told him that he is a big boy and can sleep without it. To my surprise....HE FELL RIGHT TO SLEEP!! No fussing or crying! WOW!!! Then he had a really good long nap too!!

When I put him down for the night, I thought he was NEVER going to go to sleep without his binky. He has relied on a binky from day 1 practically(see his special ducky binky above;). I think it was when he turned 1 when we only let him have it at night time and nap time... oh yeah and he gets it in the car too(keeps him quiet and helps him sleep;)

So when I put him down for bed last night, I was expecting it to take a REALLY long time, esp when he asked for his binky right as I laid him down. He cried for a little, but after 15-20 minutes of playing games with me...HE FELL ASLEEP! I couldn't believe it!! I thought for sure that he was going to wake up in the middle of the night crying for his binky like he used to when it would fall out of the crib, but NOPE! HE SLEPT THE WHOLE NIGHT THRU!! What a good boy;-)

When we went to go get our Santa pics today, I forgot to get the binky out of the car. As soon as he saw it, he popped it in his mouth and grabbed the top of his shirt like he always does;) He got me that time, but it soon will magically disappear or get a slit in it;-) ;-)

M

PS. Did you notice my new header pic? I'll change it to the Santa pic soon:) Plus I have lots more I'm going to change it to, so keep a look out;-)

Ayla Saying "Uh oh" and Standing Up Now:)

Photo and video editing at www.OneTrueMedia.com

On Thanksgiving, I was feeding Ayla and tried to get her to say "Uh oh" and she said it right away practically!! I couldn't believe it!! So now she can say "Uh oh", "Dadda", and "Momma"!!! YEA!!!

I just had to add a few pics of my handsome lil' man imitating his Daddy by putting his hands in his pockets...too cute:)

We had the best Thanksgiving with my sister-in-law, her hubby, and their 3 kiddos. We celebrated our Christmas too, since we won't see each other at that time. The kids had a blast opening their gifts and playing with them all weekend:) Thanks Steph and Greg and kids for a great Thanksgiving!!!

Here are some pics of our Thanksgiving Christmas;) and one of Ayla pulling herself up to a standing position!! This morning when my hubby went to get her out of her crib, he said she was standing up holding on!! When I went to get her from her nap, there she was...STANDING!! Wow! She catches on pretty quick:) Wasn't it like last week when she started sitting up by herself and crawling?!? She started crawling only 5 days ago, to be exact;-) Before we know it, she is going to be walking!!

Make sure you watch Ayla in these video's...you can see her eye up the presents and her brothers toys;) Oh yeah, and you can see the first video of her CRAWLING!!! YEA!! Hey Tyler...Ayla says "Thank you for her first Christmas present EVER!!" :)

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

Lil' Chris caught a lil' bug the night of Thanksgiving and was up in the middle of the night with a lil' fever and threw up twice. By Saturday he was fine though. Right now he just has a lil' stuffy nose, but it isn't running. Pray nothing worse comes of it!

I hope everyone had a GREAT Thanksgiving like us!!!
M
PS. We got our Christmas pics taken, so be watching for a few new blog header pics this month:)

VX-770 and VX-809=Potential CURE for Cystic Fibrosis!!!

Last Thursday 11/12/09, Chris and I went to a Cystic Fibrosis Volunteer Appreciation Reception. The special guest speaker was Robert Beall, the President and CEO of the Cystic Fibrosis Foundation! Exciting, right?!?! I know! It was such an honor to meet him and shake his hand. It is thanks to his dedication and the doctors and scientist hard work that my son's life expectancy is 37 instead of 5!! After the reception, I went up to him and asked to get a picture with him, and then we talked for a minute and I told him about my blog and how I talk to CFers all over the world! He seemed impressed for me only having a 2 year old with CF and doing so much already:)

He went over lots of good info, mainly including 2 drugs that are soon to be approved by the FDA and available to patients. These 2 drugs take care of the root of the problem in people with Cystic Fibrosis. They are called the Potentiator VX-770 and the Corrector VX-809. These drugs have the potential to add 10-15 years of life to patients with CF!!!!

The Potentiator VX-770 is in Phase 3, the Definitive Trial, and the Corrector VX-809 is in Phase 2, the Human Safety and Efficacy Trial. Drugs have to go through 3 phases which costs millions of dollars to do. Thanks to the money we raise through Great Strides, the Cystic Fibrosis Foundation can fund these drugs. Lil' Chris wouldn't be as healthy as he is today if it weren't for the CFF. Currently there are 30 drugs in the pipeline. Only 2 up until today have been approved, and I personally know many CFers that use TOBI. There are 13 drugs to be approved by the FDA within the next 3 years!!! Good news!! 4 of those drugs are in the last stage, phase 3. Great news!!

What are so special about the VX-770 and VX-809 drugs?? They could stop the disease at the cellular level. The basic defect in those with CF is that the chloride can't get out of the cell, CFTR. In a normal cell, proteins are transported to the outside of the cell, allowing chloride to flow in and out of the cell(see pic above). In a CF cell, nonworking proteins are transported to the outside of the cell and don't allow chloride to flow. Instead a thick, sticky mucus is formed. Robert Beall said, "Can't we just find a pill that will open up these chloride channels?" Well, the VX- 770 and the VX-809 do!!!

The VX-770 increases the opening(gating) of the CFTR channels with just a pill!! Right now is it working for those with G551D mutations, but Beall believes that in time it can work for other mutations as well. In a CF cell successfully treated with VX-770, the drug binds to the nonworking proteins on the outside of the cell, allowing chloride to flow and prevent mucus from forming. The VX-770 increased CFTR activity in Preclinical studies, and after a 2 week clinical trial, they were at normal levels!! Amazing! Their lung function improved 12%!! They are doing this study on children as young as 6 years of age and up! I didn't know they did these kinds of studies on children so young!

The VX-809 increases the number and function of CFTR channels. It is for those with double delta F508 mutations, which is what Lil' Chris has. The VX-809 helps CFTR to get to the membrane and helps get chloride through. These clinical trials are for those who are 18 and older. This one is very similar to the VX-770. Instead of increasing the opening so the chloride can flow, it makes a NEW opening to let the chloride flow. They do the same thing, but just in 2 different ways.

Robert Beall told us that "CF patients loose 2-3% of lung function EVERY YEAR. There is an 80% chance of drugs working when in phase 3. These drugs could add decades to CF patients lives! This is the most exciting time in our history, and we are closer than ever to treating the basic defect in CF!"

We need to pray, pray, pray that we raise enough money to keep these drugs moving forward to find the CURE for Cystic Fibrosis. These drugs could potentially be the CURE for Lil' Chris and other young CFers. It may not be the cure for older CFers, b/c it can't undo any lung damage that has already happened. But it can help it from getting any worse, which could still increase their life expectancy. Also, a lot less pills and treatments which is a HUGE PLUS!!! This all equals to a better quality of life:)

Other exciting news that he shared with us, is that they are teaming up with Warner's Brothers and CVS. CVS will promote movies that benefit Cystic Fibrosis! This will be huge awareness for the public! The more awareness there is about CF, the faster we will get to a CURE:)

Click here to read more about these drugs and to read about a fellow blogger I know, Somer Love, who is 30 with CF. Click here to read her blog.

Click here and donate today and do your part to help these drugs move a lil' faster to becoming Lil' Chris' CURE!

Click here to join a CF Panel if you are a CFer or a caregiver of a CFer and want to help find a cure for CF and get PAID to do it! Don't forget to mention my name;) Thank you to Traci Liberto for being the last one to mention my name:) A few days ago they called to update my info and I got $25! YEA!!! So far, I have earned $475 for basically doing nothing!! It's easy money to raise for Great Strides for a CURE;-)

With your help, CF will stand for CURE FOUND!!
M