33 month CF Clinic Visit was GREAT!!! YEA!!!

A glimpse into our CF clinic days....

Photo and video editing at www.OneTrueMedia.com

Well, I guess my sleepless night was all for nothing;) Lil' Chris had a GREAT CF clinic visit today!!! His weight was up 2 lbs!!! Yes, 2 lbs in 3 months!!! I couldn't believe it when she said he was 33 lbs!! I thought for sure his weight would be bad, but I guess all those scandishakes REALLY saved us...phewwww!!! His height was 37 3/4!! Wow, he is growing like a weed!! Both his weight and height were in the 75th percentile......that's right.......75th!!! :) I almost dropped to the floor when Dr. K told us that! I don't think he has ever been in the 75th percentile for weight! I'll take it though!!! His BMI was 55%. They like it to be above 50, so we are all good there too:) YEA!!

This visit was awesome, b/c we got to tell Dr. K that he can do some great new things:) I think he was very impressed when we told him that Lil' Chris is potty trained(except for night time), and that he can take 3 whole enzymes all at once with liquids!! YEA!!

Can I just tell you how AMAZING my son is?! He wore his mask the WHOLE time in the hallway to our room, and then the WHOLE time during getting measured and weighed in the hallway, and then the WHOLE time afterwards to the car!!! I was shocked!! I know I practiced it with him a couple of days before, but I wasn't really sure if he would do it or not. He didn't even give us a hard time about it!! He was such a good boy! As we were walking down the hallways...I was walking behind him and just started tearing up I think for different reasons....

1. I was SOOOOOOO PROUD of him! I couldn't have been ANY prouder!
2. He is getting so big.
3. Just the fact that he HAS to come to a hospital EVERY 3 months for the rest of his life, and how this is just the beginning of many, many, many times of having to wear a mask;( ;( ;( I guess it just hit me. We CF parents get that every now and then.

As for all my questions for Dr. K....

1. He doesn't recommend doing the pill form of Augmentin(antibiotic that we usually use), b/c they are HUGE!! He said they are like horse pills. So, for now we will just stick with the liquid antibiotic. Plus...Lil' Chris LOVES the taste of it;) It's like a special treat for having a bad cough;) LOL That shouldn't be funny;0
2. The bumps on his arms could be the start of eczema...that stinks.
3. He hasn't heard of the white palms thing being related to CF. Still not sure what it is.
4. I got our paper for CF Services Pharmacy filled out...does anybody else use them, they give a percentage to the CFF for a cure?? If you go to www.CFServicesPharmacy.com you can print the coupon for each of your 4 visits(once every 3 months) throughout the year, and then you will be entered to win a $50 gift card for each entry....and then a $100 gift card if you go to all 4 visits and get the coupon filled out each time:) I think it is a GREAT incentive to help make sure that no CFer skips any visits just b/c they are feeling good at that time. It's still important to go every 3 months!!
5. Hang onto your seat folks, b/c here is some GREAT news.........Lil' Chris is getting the new Blue Vest!!! YEA!!! It is machine washable!! It has an outer shell that can come off and can be washed in the washing machine!! Where was this thing when Lil' Chris was 11 months old???? At least the new CF moms will have it :) He is upgrading to the Medium. He measured at 22 inches, and the medium starts at 23 inches, so they said we can try it and he'll grow into it:) They said to give the old one away or just throw it out.

It was sad saying goodbye to Dr. K;( He was the one who told us that Lil' Chris had Cystc Fibrosis. I think he is like the only person I have ever cried in front of. He was a sweetheart, and handed me some tissues. That's got to be a rough job telling a family that their kid has a life threatening disease. He did a great job and was there for us every step of the way answering all my million and one stupid lil' questions;) "Thank You, Dr. K for taking such good care of our Lil' Chris!! Good luck with your move!! We'll miss you, it won't be the same without you!"

So another good visit under our belt. Dr. K said we are doing a great job and to keep up the great work! He doesn't want to change any meds or anything....YEA!!! Praise the Lord!!

Our next visit is the BIG ONE...the annual visit!! Dun dun dun....;) lol It is usually always near his birthday, so this year it is on June 16th. He will have to get blood work, x-rays, throat culture, and the works, and we are usually there for 3-4 hours!!! The nurse said today that the kids there don't usually do PFT's until they are about 6...so we got some time there;) I don't think I'm ready for those yet;-) lol

Thanks for all your prayers, and for all your continued prayers for Lil' Chris to keep going in the right direction:) I'll let you know what the throat culture result is when I find out.
M
PS. He finished his Augmentin and his cough is completely gone...Hooray!!! :)

Questions for Clinic Day! White Palms????

I can't sleep...been up since about 3:30am;( I guess I'm just nervous about clinic day. Am I the only CF parent this happens to? I don't think I have much to worry about, but you just never know what could be lurking in his lungs. I pray I never have to hear the words Psuedomonos. It's one of the worst bacterias, and hardest to get rid of.

One thing I am nervous about is his weight. I don't think he has gained much since his last visit 3 months ago. He still doesn't like to eat or try new foods. I have to give him credit though...he WILL drink his 600 calorie scandishakes!! Thank God!! But he won't even finish a hot dog anymore, and that's like the only thing he'll eat!! Please pray he doesn't fall below the 50th percentile. It's only happened once before, but we have come really close lots of times. I think this time it's going to be really close again.

Today is our last visit with Dr. K. He was the one who broke the news to us about Lil' Chris' diagnosis almost 3 years ago. He will truly be missed;( I will try to remember to get a pic of him and Lil' Chris for his baby book:)

I have a few questions for Dr. K today;)

1. Does Lil' Chris need a bigger Vest? Can he get the new BLUE one that I hear is more comfy??? (Thanks Heather for telling me about the new blue and pink Vests:)
2. Can he take pill form antibiotics instead of liquid now since he swallows his enzymes with liquid??? (Thanks Adain's mommy for the advice on this one;)
3. He has lil' bumps on his arm...is this CF related??
4. The palm of his hands are turning white, is this CF related?? I heard Drysol helps, is it ok for a toddler to use?? (Thanks CysticLife friends;)

I've ask about his hands on CysticLife and got a great response, and it DOES seem to be CF related. Some adult CFers told me that Drysol helps. They say that it can be painful, so Drysol helps a lot!! Lil' Chris never says anything about them hurting, but I don't want them to get to that point. I'd like to get rid of it now if we can. I first started to notice it in the beginning of March when he was taking a bath one day. His hands were really pruny (but that's nothing new since most CFers get pruny way quicker than others), but when I looked closer, they were peeling on his palms pretty bad!! Hours after his shower, some skin was still coming off, but the next day it wasn't peeling that much anymore, but where it did peel...there were white marks or blotches. Now, almost a month later, his hands haven't peeled like that, but the creases of his palms are all white. I tried taking a pic, but you couldn't see it and he wouldn't let me keep trying. I think he is starting to know that something is wrong, b/c I keep asking to look at his hands all the time now. They aren't changing though. How do I get rid of these white lines??? Hopefully the doc will have an answer for us today. I'll let you know.

The last couple of days I have been trying to practice with Lil' Chris to wear his hospital mask so that he will wear it in the hallways at the clinic...we'll see how it goes today;) I have a pic of him wearing it, but I can't add it to this post right now, b/c I am uploading a TON of pics right now for another post;) lol I'll add it to that post;)

Pray for a good, quick visit,

M

PS. Tonight we have a Great Strides meeting. I'll update you later on how our walk is coming together:) Make sure you register to be a walker...it's coming up in just 4 weeks;)

500 Hours on the Vest!!!

Lil' Chris started his Vest when he was just 11 months old(3 months younger than what Ayla is right now...hard to believe he was that little and doing his Vest). My hubby dug up some old pics of the first time Lil' Chris did his Vest. He looks so little!! Where did the time go???? Now, 22 months later...he has been sitting like a good lil' boy(most of the time;) for over 500 HOURS!!! I give him A LOT of credit for all that he does for such a lil' dude!!

Here is a montage of some lil' fun photo sessions we've had;)

1. His first time using the Vest at home(the instructor was actually there teaching us how to use it, but I didn't get a pic of her;)
2. Me trying to get a good pic for 2010 fundraising. Don't worry, he didn't get hurt falling off the machine;)
3. Lil' Chris, Mommy, and Daddy having fun during a night Vest treatment(I like to tickle him when he is on his Vest...he just LOVES it;) lol He had sooooo much fun taking Mommy and Daddy's pic!! ;)
4. Video of him doing his Vest yesterday while eating a Go-Gurt and standing on one hose;) He loves to snack while he is doing his vest. We were going to try to put video of him doing his Vest on the commercial, but couldn't figure it out...maybe next year:)

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

Have a great day! Don't forget to keep Eva's family in your prayers.
M

Breathe Easy Eva;(

Unfortunately we lost another GREAT CFer yesterday...Breathe easy now Eva Markvoort;(

http://65redroses.livejournal.com/

People are dying everyday from CF. Please continue to donate to the CFF towards a cure, and be sure to become an organ donor TODAY!! Eva was only 23 and passed away while waiting for a second double lung transplant, b/c her body rejected the first ones. I've said it before and I'll say it again...even though the life expectancy is 37, only 50% will actually make it to 37;(

Eva was a GREAT girl who was GREAT about spreading the word about Cystic Fibrosis. When Lil' Chris was first diagnosed, I remember searching the web and found many interviews of her with TV shows talking about CF. She even did a movie in Canada about CF. Click here to see the movie trailer. Click here to see the last post I did about Eva, and to see her saying "Goodbye"...so sad;(

Please, please, please donate today if you haven't already. You can see by the loss of another CFer how important it is to find a Cure NOW!!! Click here to donate and to see our new 2010 Great Strides commercial(it is at the bottom of my Great Strides page). Thank you sooooo much to my wonderful hubby for getting it all done today;) Thanks honey...I LOVE YOU!!

Did you know that by the year 2013, the CF Foundation will have 12 drugs in Phase 3 trials or to the FDA approval desk and 4 of those drugs are aimed at CURING THE BASIC DEFECT OF CF. This is all because of you and your donations! Thank you!
M

Another Successful CiCi's Fundraiser:)

Thank you everyone who came out to enjoy some great food for a GREAT cause at CiCi's tonight:) I GREATLY APPRECIATE IT!!

Special thanks to my awesome Kohl's associates that came out to help so we could get a $500 grant from Kohl's. Thank You...

Kathleen

Stacey A.

Casey C.

Beth Z.

Also, special thanks to Alma, another CF mom in Wooster, who came out with her family and who spread the word on facebook:) Thanks Alma!!

Thank you Stacey and Beth who spread the word also and had family and friends come out to support CF:) Thank You Stacey for spreading the word on Facebook too:)

Also, a special thanks to my Culligan's water sponsor for our walk who came to CiCi's tonight with his family:) Thank You, Jason(I think that's what his name is;) He is super nice! He was the first sponsor to ever tell me to save his phone number and give him a call for next years walk too!! His whole family is really nice. I first met them at one of my CiCi's fundraiser LAST year!! I just happened to see his wife at Kohl's earlier today and I recognized her and told her we were doing it again, so they came. As I was talking to them while they were eating, Jason asked me what my name was and then said that he talked to me on the phone the other day for Culligan's. I had no clue that was him!! Small world:)

I met so many nice people tonight!! I even had a girl donate AFTER I had everything packed up and put away!! It was soooo nice of them to donate even though the raffle had already been pulled:) Thank You:)

The winner of the raffle was a girl named Danielle, but when I tried calling the phone number there was no answer and no voicemail. I'll try again tomorrow. She won a basket full of Bath & Body Works products which my friend from work got her friend who it the manager there to donate them:) She is super nice to do that:) Thank You girls:)

I won't find out for another week or so how much we raised in the percentage from the receipts, but I can tell you that we did raise $135 in tips, donations, and raffle!! Also, we had our 5 Kohl's associated, so that means that we will get a $500 grant from Kohl's!! YEA!!! Overall, we had a great night and had a lot of fun:)

Our next CiCi's fundraisers are on April 22nd and May 27th from 4pm-8pm again at the Wooster CiCi's. Hope to see you there:)

M

PS. Did I forget to mention that it snowed again on my fundraiser?!? Yup...snow on every CiCi's fundraiser so far...unbelievable!!!

CiCi's Fundraiser March 25th 4pm-8pm

Join us this Thursday, March 25th, from 4pm-8pm

at CiCi's Pizza in Wooster

to help find a CURE for CYSTIC FIBROSIS!!

A percentage of your bill will go towards a CURE!!

Don't forget...they are still doing their $3.99 buffet for their 25th Anniversary, and there will be a raffle!! Tell your friends:)

So far, I only have 4 Kohl's associates signed up, so pray I can convince one more person to come and help out so that Kohl's will give us a grant of $500 for a CURE for CF!!

Thanks,

M

PS. Guess what Lil' Chris did tonight...hint: it was not good, but I think just about every kid does it.

CF Great Strides Walk Tips & Tricks

Phewwwwww...I got a lot done today for our walk for a cure for Cystic Fibrosis coming up on May 1st!! I'm not sure how, b/c I only got about 4 hours of sleep this morning. I had an overnight shift at work last night, so I got home at 6:30am and then got to sleep until about 10:30 or 11am when my hubby had to go to work. For some strange reason I wasn't tired at all and had lots of energy:) ANDDDDD for some strange reason the kiddos were especially good and playing quietly!!! :) So I took advantage and started making some calls and got food, water, and entertainment for our walk!!! YEA!!

Here are some tips if you are starting a walk in your area, or are part of the planning team;)....

1. Set a goal for yourself....example: "Today I am going to get all the food we need for our walk!"
2. Make connections...the first year is very important. Last year was our first year and I went around town from store to store trying to get food, drinks, ice, and prizes donated. It was a lot of work and time away from the family, but it definitely made this year A LOT easier. Instead of going out to each place...I just called them up and asked to speak with the manager, and then asked if they would be able to donate again like last year! Most of them said..."Well, how much did we do last year?" I told them and they said "We can do that again:)" It was that easy!!! I was shocked!
3. Store contacts in your phone for next year...Last year I wrote down all my connections so I knew who to call this year(that was a HUGE help;). This year, I saved all the phone numbers in my cell phone with the contact name, so I know who to ask for next year. For example: April is my contact at Domino's, so I stored her in my phone as "Domino's Pizza April". So next year when I call, I'll just ask to speak with April instead of the manager, plus she may remember me and that may make it easier to get the donation;-)
4. Start your "walk day/week before list of things to do" now...as you are making your calls, you will have to set up different times to pick up the products and whatnot. So start your list of who is going to pick up what, when, and where. For example: My husband is going to pick up the water on Thursday before our walk at Culligan's. This list will help you not to forget about anything. Don't forget to add calling the local radio stations, local newspaper, and local TV station a week or 2 before your walk to get them to advertise it;-)
5. Make a reminder call the day before your walk...last year I didn't, and it ended up biting us in the butt!! There was one pizza place that didn't show, and when I called them they said they had no record of it. If I would have called, there wouldn't have been a problem. Luckily we got pizza from 2 other places too and 30 happy meals for the kids:)
6. Remember to have fun...don't let the stress get to you, delegate if you can. Your walk day is a day of celebration! Join in and celebrate all the wonderful money raised to help find a CURE for Cystic Fibrosis!!
7. Send Thank You cards...Don't forget to send thank you cards to all your sponsors and donors;) You can even make them up ahead of time and give them to your sponsors as you pick up the pizza for instance;)

I hope this helps someone, somewhere;) Let me know if you have any questions.

So as of right now, we have the following for our walk...

1. 100 bagels from Panera Bread
2. 5 large pizza's from Domino's
3. 5 large pizza's from Papa John's
4. 5 gallon cooler of water from Culligan's
5. 2 cases of water bottles from Gary's Liquor Store
6. Fire Truck coming for the kids
7. Pat Catan's craft store doing a craft table for the kids
8. Our local TV station is going to air our commercial for our walk starting in April

Things still to do...

1. Get about 5 more pizza's, chips, clown/chemist to make balloon animals, contact local newspapers, and radio station.
2. And of course...get more donations;-)

I'll keep you posted. Have a GREAT week:)

M

2 Years of Blogging Already?? / Cough Update

I can't believe it has been 2 YEARS since my sister D and I started this blog!! Boy, does time fly:) I still can't believe how many amazing people I have met, b/c of my son having such a horrible disease. I have learned so much from all of you!! Lil' Chris wouldn't be where he is today if it wasn't for you all!

Here's just a few of the things I have learned b/c of this blog and the comments I have gotten from other CF moms and adult CFers:

1. Prevacid Solutabs can leave purple stains on clothes. That was really nice to know;) Thanks Susanna:)


2. To put the whole enzyme on top of the applesauce instead of opening them and dumping them on the applesauce. Thanks Phenny's mom:)


3. The big straw method to teach Lil' Chris how to swallow enzymes with liquids. Thanks Aidan's mom:)


4. A 2 year old CAN swallow whole enzymes with liquids! That was the BEST advice and such a life-saver for us all:) Thanks Lucy's mom:)


5. The importance of becoming an organ donor.


6. The importance of exercise for Lil' Chris and his lungs.


7. All kinds of different fundraisers.


8. I never would have met Ronnie and known about www.CysticLife.org if it wasn't for this blog. CL is AWESOME btw...so check it out:) Thanks Ronnie and Mandi:)


9. I also learned of different ways to increase calories...like Scandishakes(I had to ask our dietitian about these, not sure why they never told me about them) Thanks Casey:)


10. I learned about nasal polyps, PICC lines, and hospital stays. Thanks Aidan's mom, and Kellee & Michael:)

Most of all, I've learned that we have such a GREAT little CF community:) I love all of your comments and great advice...keep 'em comin;) I thank you all so much:)

Starting this blog 2 years ago, I never would have thought I would have so many followers!!! To date, we have 59 blog followers, 38 Facebook followers, and have had almost 18,000 hits!! That's AMAZING!! THANK YOU ALL FOR TAKING THE TIME TO READ THIS BLOG!! It's nice to know that I am not just writing to myself;-) lol Thank you also to all my friends and family for keeping tabs on Lil' Chris and for all of your prayers...they are GREATLY appreciated:)

As for an update on Lil' Chris' cough:

He is loving his Augmentin! He loves the taste and always wants more than just his 1 tsp 2 times a day;) I love it b/c it worked!! He has not coughed once all day today!! YEA, no more nasty wet cough!!

Bloggy love to you all :)

M

Rachael Update/Link to Become an Organ Donor

For an update on how Rachael is doing post transplant, click here. Please keep her in your prayers. She has had a set back, but that is common so close to transplant. To be clear, Rachael does not have CF, but she does have a rare lung disease which is close to CF. As I have mentioned before, a double lung transplant is the last resort for CFers and others with rare lung diseases.

PLEASE BECOME A DONOR TODAY!!!

Click Here to find out more about how to become an organ donor in your state and how to ensure your wishes are carried out upon your death. If you decide to be a donor or already are, Click Here to send a family/friend notification card. For those who know my email address, please let me know (or send me a notification card) if you made the decision to become a donor.

Thanks,
M

Great Recipe/Bath Toys Carrying Germs

First off, click here for an AMAZING recipe for some Blueberry Crumb Bars! I can't wait to make them! They look delicious! Some good calories for Lil' Chris...that is IF he would eat them. If not...then more for Mommy;-) lol

Second, do you ever wonder how clean your kids bath toys really are??? Well, watch the video on this other site(I tried to post the video here, but it kept going to the current date clip, sorry)...Click here to watch it, find out more info, if they have PVC in them, and how to clean the toys properly. Also, click here to check out some awesome bath toys that don't have the little holes for mold and mildew to collect, they are called Boon toys. I just might have to get some for Lil' Chris' birthday coming up in June:) With Lil' Chris having CF, I always wondered if the toys that squirt collected mold and mildew, apparently they do! I will be throwing away some of his bath toys, b/c it's not worth the risk of having these bad germs and bacteria around him!! It could mean BAD news for him, for Ayla it may not effect her, but it's still not worth the risk.
M

Rachael got the Call!!/Organ Donation

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

This is Rachael a few days ago. Today...SHE GOT THE CALL!! She is still waiting to hear if the lungs are good or not. I pray that they are, b/c she REALLY needs them!! Please say a prayer for Rachael, her family, and the donor's family as they are grieving.

Now you can see why it is sooooo important to become a donor. You can save up to 7 lives that are desperately hanging on like Rachael. Please become a donor today and spread the word!!

Thanks,
M

Tumbleweed Fundraiser went GREAT/Cough Update

I think the Tumbleweed fundraiser went great today!! We had to do take-out for both lunch and dinner, b/c Lil' Chris' cough has gotten even worse. His nose is still stuffy too;( I called the CF Clinic today and they called in an antibiotic for him. This evening I went and picked up the Augmentin from CVS, and then went and picked up our take-out order at Tumbleweed. I saw one of my associates carry out some take-out and I saw another associate pulling in as we were leaving. She said that there were going to be like 5 of them eating there tonight! YEA!! While Chris was picking up the food, he saw 2 associates that he works with in there too!! I think it is awesome how we have so many that support Lil' Chris and care about him:)

THANK YOU TO EVERYONE WHO ATE AT TUMBLEWEED TODAY FOR A CURE FOR LIL' CHRIS AND ALL 70,000 LIVING WITH CYSTIC FIBROSIS!! IT MEANS THE WORLD TO US ALL:)

I'll let you know how much we raised when I find out...probably in a few days.

Thanks again everyone,

M

Tumbleweed Fundraiser TODAY for Cystic Fibrosis

Tumbleweed Coupon2

Well, today is the BIG day!! Print the Tumbleweed coupon above and take it to the Wooster Tumbleweed, and 10% of your bill will go towards a CURE for Cystic Fibrosis!! Gather your friends and family and go to Tumbleweed and have some GREAT food for a GREAT cause!!!

I just ate round one;) Mmmmm it was delicious!!!!! I LOVE their food!!! They have the best fries!! Now they have waffle fries too! If you click here, you can get a coupon for FREE Queso Waffle Fries!!

Hmmmm what should I have for dinner.....I think I'll have my second favorite...CHIMICHANGA: Your choice of a beef, bean & cheese, beef and cheese, or peppery chicken burrito, deep fried to a golden brown.

I think I'm going to try the Queso Fries too:) I can't wait;-)

Tumbleweed Fundraiser 3/9/10

Tonight we went all around Wooster and passed out the Tumbleweed coupon for our fundraiser tomorrow(Tues 3/9)!!! I'm so excited!! We passed out lots and lots of coupons, so hopefully we get a lot of people to go tomorrow! I was getting a great response from a lot of people. Some told me that they are going to take their whole family...others told me that they would get their co-workers to go with them...and one told me that they are having a manager/staff meeting tomorrow and that she would have it at Tumbleweed now!! YEA for big groups!! 10% of a big bill like that is a lot of money! I just hope everyone remembers to take the coupon with them. I had a few stores say that they would leave them on the counter for customers to take. Some even went a little bit further and said that they would put them in the customers bags!!! I love it when they do that!!!

Thank You to Everyone that I spoke with today!!! :)

I also passed out a lot of sponsorship forms too. Mainly to all the banks in town. I hope to hear good news from them:) That would be great if they all became "Single Rose Sponsors" or higher!! The sponsorship form varies from a Single Rose Sponsor at $125 to a Site Sponsor at $3,000. I really hope we get a Site Sponsor this year, last year we didn't have one. If you would like more info on how to become a sponsor, just email me at lilcmom@gmail.com and I can email you the form and info on Cystic Fibrosis.

Below is the Tumbleweed coupon again. All you have to do is print it and take it to the Wooster Tumbleweed anytime tomorrow(Tues 3/9) between 11am-10pm and turn it in and then 10% of your bill will go towards a Cure for Cystic Fibrosis! The best part is...you can even turn the coupon in for a take-out order!!! YEA!!! Wanna see their menu ahead of time... click here and call in a take-out order, but don't forget to take your coupon and turn it in;-) Also, if you click here, you can get FREE Queso Fries!! Mmmmmmm!! My favorite dish is...the GRILLED CHICKEN BREAST DINNER: A half-pound chicken breast grilled over a live mesquite fire. Make it saucy with our BBQ sauce or Bourbon Glaze. $9.99 plus get 2 sides. I usually get the veggies and a baked potato...mmmmm it is soooooo gooooooood!!! I LOVE THEIR FOOD!! I can't wait to try these new Queso Fries too:) They look really good!!

Thank you all in advance for making tomorrow a success!!! Don't forget to print your coupon below and take it with you tomorrow:) Please spread the word!!!
Tumbleweed Coupon2 Thanks again. It is greatly appreciated,
M

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

Cayston is Available/Bad Sanitizers/Cold Update

Remember this post where I mentioned a new inhaled antibiotic getting approved by the FDA called Cayston??? Wellllllllll....IT'S AVAILABLE NOW!!! The CF Services Pharmacy has it! That's where Lil' Chris' meds all come from, b/c a percentage of each purchase goes towards a cure for Cystic Fibrosis:) Click here to see the whole article on the CFF website. Cayston is administered with a new device called the Altera® Nebulizer System that allows patients to take the medicine in less than FIVE minutes, a fraction of the time required for other inhaled antibiotics. It is the first new inhaled antibiotic developed for CF in more than a decade. I love this paragraph:) If only they could start making ALL of them to be administered in just 5 minutes...one can dream;) Although, it looks like it could possibly be a reality now:) All I can do is keep raising money and keep praying!! Thank you to everyone who has donated or raised money in the past to make this new drug be available for our precious CFers:)

How’s this for irony – the U.S. Food and Drug Administration is warning consumers to stop using two brands of hand sanitizers because they contain … dangerous bacteria.

That’s right. “Bee-Shield Hand Sanitizer” and “MD Quality Hand Sanitizer” (both made with aloe vera) were found to have high levels of Burkholderia cepacia, which “can cause serious infections in humans,” according to the FDA alert. Click here for the whole article. Kinda ironic isn't it? Sad...but ironic!

As for a quick update on every one's colds:

-Mine is great and was gone in practically 3 days.

-Ayla's nose has been slightly running still and it has been over a week now.

-Lil' Chris' nose never really ran like Ayla's and mine...it just kinda stayed clogged in his nose. Not sure if this is b/c of the CF and all the thick, sticky mucus or what???? Anybody else have this happen with their lil' CFer? Thankfully Lil' Chris doesn't mind blowing it out when we ask him and then he EVEN lets us suction it out, which is GREAT!!! BTW, I have to say a big THANK YOU to my sister, D. She told me before Lil' Chris was born to hold onto the lil' suction bulb that the hospital gives you when you have a baby. I am SOOOOO glad I listened to her, b/c the ones you buy in the store are CRAP! The hospital ones works like a charm every time;-) I even kept Ayla's too:) Thanks D!!!

-Lil' Chris also has a cough still too;( I think it might be from the drainage he might be having down the back of his throat, b/c the mucus is so thick. He has a CF clinic appt on the 31st, so hopefully it will be gone by then, if not, then hopefully we can get some answers. I'm kinda worried about this appt., b/c I think his weight is down again. He hasn't been eating as much lately.

Please pray Lil' Chris and Ayla get well soon!
M
PS. Guess what Ayla is doing now;)

New Nonprofit for CF/New Fundraiser

Thanks to all the good info I get from Cystic Life on facebook...here is another great article with promises of a CURE for Cystic Fibrosis. Click here to read about how a family member of someone with CF created a nonprofit organization called CFRx, to fund research for a CURE. I wish them all the best, and hope and pray that they will find a CURE for ALL people with Cystic Fibrosis.

One of these days when I have more time, I want to put together a list of all the places I have found that will do fundraisers. I can't do them all, b/c they may not be near me or I just don't have the time to do them, but there are A LOT of place out there that will help in fundraising for a great cause. I really want to share them, b/c maybe you might want to look into them or have the time for them. Some places really surprised me that they do fundraisers!

Today, (as I was typing this post actually;) I got an email from a blog reader, Nicole, who said she was encouraged to see another fellow CF mom dedicated to finding a CURE for CF! She saw on my blog how I like to do fundraisers and sent me a link to a place I have never heard of before that does fundraising! It's called Monkey Joe's, click here to see if there is one in your area. It's a cool Play House kinda! It has the big bouncy things, slides, jumping things, all kinds of cool stuff! It's seems like a great place to have birthday parties! The best part, is that they will donate 15-20% to your charity!! That's AWESOME!! I only wish we had one close to us;( Good news is that they have 2 really close to my sister, D!! My sister and her husband are all about fundraising for Lil' Chris and CF! They have raised $185 so far and they just got started!! I know my sister is going to love this place, especially since they sanitize everything, so they say;) She's a sanitizer freak like me;) LOL

Thank you Nicole for telling me about Monkey Joe's!!! I love to hear from my readers and get tips from them:)

If anyone else has any other fundraiser ideas, I'd LOVE to hear them and pass them along!!

On another note, I heard from CiCi's Pizza's Marketing Manager today and I am going to be dropping off 10 packs of Pin-Ups so that 10 of their stores can do Pin-Ups in May!! I'm SOOOOO EXCITED!!! Last year only 3 of the stores did them, so to have 10 this year is AWESOME!!! I wish I could get them to do it nationwide though. Maybe someday:)

If anybody knows of other places that will do Pin-Ups for Cystic Fibrosis, please let me know and I will try to contact them:)

We are all in this together, and we WILL find a CURE for Cystic Fibrosis!!!

I gotta give a big shout out to Jeanette and the 3 girls in her office at Wayne Saving Community Bank for doing Jeans 4 Genes last Friday!! They all paid $10 to wear jeans for CF!! YEA!! They may do it again in a few months too:) They do it once a month, and they each take turns in picking the charity. Jeanette works with me at Kohl's and donated her month to CF. YEA!!

THANK YOU JEANETTE & GIRLS!! YOU ROCK!!

M