Applebee's CF Fundraiser TONIGHT 4-9pm / Q & A

Click on the flyer below and print it and bring it to the Wooster Applebee's TONIGHT 5/12 anytime between 4pm and 9pm and then 15% of your bill will go towards a CURE for CF!!!

I got a great question today, so I thought I would share the answer with everyone in case anyone else was wondering;)...

Question from Christine from CF Momma:

Did you set up the Applebee's Fundraiser? I would like to know how you go about getting all these great fundraisers for next year. Or maybe even this year.

Answer:

Yes, I set up the Applebee's fundraiser and I set up all my CF fundraisers. It's actually really easy to set one up:) All you have to do is call or go in, and ask to speak with the manager. Then ask the manager if they do any fundraisers to help out the community. If they do, then they will either ask you what date you would like to do one, or they will give you a paper to fill out first and you can write the dates when you would like to do one. They will let you know if they already have one booked that same night or not. So you know, you usually need the 501c3 tax ID number. You can get it by calling your Great Strides Chapter. Then they will ask who to make the check out to...Cystic Fibrosis Foundation. Sometimes they ask for the mailing address, or you can just pick it up and then send it in yourself, or turn it in at your walk.

Then it's up to you to pass out the flyer that they email you. If you don't print them and pass them out or share them through email, then you won't raise as much money. I've been told that the best way to spread the word is on Facebook...from my experience...this IS true!!! That's why I LOVE it when my friends repost my flyers or the info about my fundraisers, b/c I don't have too many fb friends from this area since I'm not originally from around here. So thank you everybody who reposts them:)

Some places that I know of that do them are: Applebee's, Friendly's, Max and Erma's, and CiCi's Pizza. Every area is different though. I have heard of Bob Evans and Buffalo Wild Wings doing them too, but the ones in our area don't do them.

So you know, you can search online at the restaurants in your area to see if they do any community fundraising. That's how I originally found out about some of them.

Also, you don't HAVE to do all your fundraiser BEFORE your walk. You can do them after and just send the money to your chapter. Just don't forget to put your team name on it;) What I do, is I have the restaurant send the check directly to my Great Strides chapter, and then I put all the tips and raffle money in my checking account and then make an online donation to my Great Strides page. It's easier then making out a check and sending it. Plus it shows up on your Great Strides page quicker;)

I hope this helps someone in someway:) Let me know how you make out!

If anyone else has any questions for me, just let me know and I'll answer it soon:)

M

Getting Closer to a CURE/Update/Vest Pics

Lil' Chris is still doing GREAT!! His daddy on the other hand...not so great:( He may have gotten what Lil' Chris had a couple of weeks ago...fever and all:( I never did get the results from Lil' Chris tests, so still not sure what it was that he had. I've tried to call the dr.'s a couple of times, but it has always been at the wrong time. I'll try again Monday. Please pray that Ayla and I don't catch it too...also that Lil' Chris doesn't catch it AGAIN!

We had a busy summer! 3 very long car rides! 2 to NJ and one this past weekend to Maine! We had a BLAST each time! Good thing our kids are like us and don't mind long car rides;-) Our trip to Maine took 17 hours in the pouring rain to get there and 15 hours on the way back! It was long, but the kids did GREAT!! Thanks mom for the DVD player for the car! They helped A LOT!! Not sure how we got along without it before;-) Thanks to all our Maine relatives that put up with us, we had a lot of fun!! The pictures are uploading now, so they will be coming soon;-) Here are some pics of Lil' Chris helping me pack up his Vest for the trip:) He liked sitting in it before I put the Vest machine in:) Then he tried to pick it up when it was all ready to go! It weighs more than he does, but it was cute watching him try to pick it up;-) He's such a BIG helper!!

Photo and video editing at www.OneTrueMedia.com

I got this GREAT email about a promising drug that I've talked about before. Well, we are getting closer and closer to getting it approved by the FDA!! This could be HUGE for CFers!! Here is the email I got and you can read more about it by clicking on the links highlighted in red....

Dear Lil' Chris' Mom,

We’ve reached an exciting milestone in the search for a cure.
One of our most promising potential therapies, VX-770, is moving forward in clinical trials.

This compound has the potential to be one of the first drugs ever to treat the basic genetic defect in cystic fibrosis.
VX-770 (developed by Vertex Pharmaceuticals) is already being tested in adults. This week, for the first time, Vertex initiated a clinical trial in patients aged 6 to 11. Once the studies are complete, the FDA will determine if VX-770 is safe, effective and acceptable for approval.

To find out more about VX-770, read the full story and our FAQs. You can also read a very exciting article in today's Xconomy, quoting CF researcher Bonnie Ramsey and highlighting the work of the Cystic Fibrosis Foundation.

This milestone would not be possible without your support, and we need your help – now more than ever – to make this drug a reality.

If you have CF, you can help by participating in the clinical trial. Learn more by calling the Vertex clinical trials hotline at (877) 634-8789.

You can also help support this and other lifesaving research by making a donation today.

Together we can make CF stand for "cure found."
Thank you for your support,

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

Isn't that awesome?!? Thank you EVERYONE who has donated to help find a CURE!! Your money is being put to good use! We are getting closer and closer to a CURE!

If you haven't donated yet and would like to, click here to help us get to a CURE! My personal goal is to raise $5,000 by the end of August. So far we are at $3,907.63!!! Please tell your family and friends and pass the word along to donate to help find a CURE for ALL CFers!! I think today I will send out my last email reminders for this year about donating. I encourage all CF bloggers to send their reminders one last time too. PLEASE, PLEASE, PLEASE DONATE TODAY!!

TOGETHER WE CAN MAKE CF STAND FOR CURE FOUND!!!!!!!!
Thanks,
M

Updated on Enzymes/Q&A

I know some of you have been wondering how Lil' Chris has been doing with his enzymes since I posted this...

Friday, May 1, 2009

Refused to take Enzymes for the First Time
Ughhhhh...I had a rough night with Lil' Chris tonight. He refused to take his enzymes twice!!! I tried to feed it to him with applesauce like we used to the first time, but he just kept turning his head saying "No". Then my second attempt, I put them in his Applesauce and Ham baby food jar, he still refused to take them! I had to throw away 6 enzymes, b/c when we put them on top of his food, they get wet and therefore are no longer reusable. I didn't know what to do. I knew he was hungry, but he just would not take his enzymes! This is the first time he has done this.He was crying for his milk, but I was hesitant to give it to him w/o his enzymes. I reluctantly gave in and gave him some. It was only 1/2 a cup, but it did have some cream in it to boost the calories. I really hope he doesn't get a belly ache from drinking it without having his enzymes first. Does anybody have any advice? What should I do when he won't take his enzymes? Will the milk bother him? If so, what will happen?I need you CF moms out there!!! What did you do when your child didn't want to take their enzymes anymore???? Do you have any tips or tricks for me???Please pray that this isn't going to be a daily thing.
Thanks,M

Click here to read all the comments I got from this post.

First off, let me start by saying that Lil' Chris did not seem to get a stomach ache thank God! I asked Katey(an adult CFer) what happens when a person with CF does not take their enzymes and this is what she said...

Yea...i guess all clinics are different. I was always told that I could take them up to 2 hours before or 2 hours after. But yes...i think if you can take them before you eat....then that's better and that's what I always try to do. But it wouldn't hurt if it's a little after...it's better than nothing!
Hey...I don't mind you asking at all! I'm happy to help whenever I can!
Every person is different in how they react to medicines...as I'm sure you already know. Currently, I can sometimes go without my enzymes (not on purpose, but say if i forgot one day), and nothing happens. It's going to depend on what you eat. For example...if you drink milk or eat something heavy like Mexican foods, ice cream, pizza, etc., more than likely that is going to upset your stomach. Basically, the cf patient is going to experience stomach pains/upset stomach. Possibly, get a little constipated or having trouble going to the bathroom...or it may be the opposite...diarrhea or very loose stools, and very shortly after you eat whatever you are eating. But like I said, every person will react differently. There are those who it really doesn't bother them if they miss taking them....and then there are those who have to religiously take them to avoid major stomach issues. But other than that...it's not going to mess anything up; it's not an extremely serious thing if he misses taking them. You are just going to have to see how he reacts to them. You'll find that it is similar once the doctors start adjusting the amount he takes as well. Sometimes it takes a trial and error run to find out what amount best fits lil Chris. It may even be different than what the doctors recommend. If his stools are really hard, then he needs more enzymes. If his stools are extremely soft and/or he is having diarrhea, then he is taking too many enzymes. Make sense? I hope this helps!
~Katey

Thanks Katey for all the GREAT advice!!

As you can see from the comments, some dr.'s say that enzymes are only good for one hour and some say longer. Since I've been blogging, I have heard this before, but I've noticed that I've only heard it from ADULT CFers. So, I don't know if maybe the adult enzymes are different from the child ones, or what. So what I have decided, is to listen to our dr. and try to give the enzymes before he eats, and to keep it within 1 hour. BUT, if he won't cooperate with the enzymes once in a while, then I will try to let him snack on something light(low cal) while I wip some mashed potatoes up or something I can slip the enzymes in and he won't notice. Now I'm sure there will be times when I will get fed up with him and say like Daniel's mom..."No enzymes, No food!" But it is SO hard for me to do that, b/c I know he needs to eat, and he is so stubborn that he won't care! He would rather go without eating for hours! That's not good for him! So where does this lead me...frustrated:-(

His big problem is...if he sees the blue and red enzyme on the spoon before it reaches his mouth, he turns away and says "no". I've tried what Phoenix's mom said and he will play with it in his hand, but won't put it near his mouth!

Yes, I have tried the different flavored applesauce's and that seemed to work...THANK YOU LESLIE!!

As for Ronnie's question(love his blog, btw. Click here to check it out;) about getting the enzymes wet...I had to throw them away, b/c I knew it was going to be a LONG time before he would eat anything. He is very stubborn...must get it from his Daddy;-) JK Honey!! Our dr. told us not to let them sit in applesauce too long. He said to prepare it right before we gave them to him. Now he told us this when we used to sprinkle them on top of the applesauce. He never said if it was different now that we use the whole capsules. Thank you Anonymous person for telling me that 15 min. is ok;)

I'm not really sure what led to this problem with the enzymes, it could be many things...

1. He is getting close to those Terrible Two's!
2. We started doing the whole capsules instead of sprinkling them on top of applesauce.
3. We started putting them in foods other than applesauce.
4. He sees Ayla doesn't have to take any before her bottles.
5. We don't hide them well enough in the spoonful of food. It seems like if they are sitting towards the back of the spoon, then he ALWAYS spits them out. I guess b/c it's the last thing in his mouth and he can feel it more b/c it's not in the middle of the spoonful. We only do one at a time, but it sometimes ends up at the back of the spoon. We just have to be careful, b/c once he finds one and spits it out, then he won't take the others.

I have a feeling it is b/c of #3 and #5. We've been trying different things and it seems like he doesn't mind them as much in the flavored applesauce's and in his vegetable jars of baby food. I thinks the problem started when I started putting them in his applesauce and chicken baby food jars, which is very thin. That's probably why he kept spitting them out, he could feel them more.

I guess we just have to live and learn, am I right CF moms?? Thanks for all the GREAT advice everyone!! I really appreciate it! =)

Hopefully this post will help some parents of an upcoming Terrible Two CFer;-) LOL

M

Any Questions?

I've been getting a lot of questions lately(mainly about fundraising), so I've decided to do a Q & A post instead of answering through email. This way everyone can benefit! So ask away!! I'll answer pretty much anything:) I'll try to answer them all this weekend. Hope you like the pic above! It's my new fav;-)

I sent out some of my Great Strides emails today and already got a donation!!! I was so excited to see such a quick response!!

Thanks Uncle Joe and Aunt Diana!!!

You guys are the BEST!!