Our old CF Commercial that plays on MCTV. Still working on this years.

Friday, May 22, 2009

CF Commercial and TV Ad are FINALLY on TV

Guess what???? I just saw our ad for our Great Strides Walk for the first time on TV!!! I was SOOOOO excited that I had to grab my camera and take a pic to share it with you all:).....

Our ad is on the bottom half of the screen. It plays every 10-15 minutes!!! It stays on the screen for about 20 seconds! Isn't that AWESOME!!! I was running on the treadmill when I first saw it and I almost flew off!! That would not have been good, b/c I would have flown right out the window and fell 2 stories:0 It caught me by surprise, I guess!!

I found out today that the CF commercial that my husband and I made is playing on TV now too!!! I haven't caught it yet, I just found out about it. If you want to see the commercial, go to the top of my blog. It is under the header pic of Lil' Chris. Check it out!

What an exciting day for all CFers, especially in the Wooster area:)


PS. I've posted about 3 times today, so make sure you scroll down and check out my other posts. I could use some advice for some entertainment for our walk;)

HELP!!! I Need Some Suggestions for our GS Walk!!

Does anybody have any good suggestions for some entertainment for our Great Strides Walk??? We don't have anything confirmed right now and our walk is only 3 weeks away! As of right now, we have a radio and maybe a clown. I want our walk to be fun and exciting so people will come back again next year! Any suggestions??

Today I went out fundraising for a couple of hours and I was able to get:
  1. 5 more pizzas donated by Domino's. Now all we need is another 5 pizzas and we will be set!
  2. I was also able to get a tray of cookies donated from Ryan's Restaurant. And Daniel's mom is going to make some too, I think!
  3. I was also able to get 8 bags of ice donated too for the water that I picked up today that I got donated the other day. Erica said she has a lot of water left over from the walks from last weekend, so we should be good on water now too!!
  4. I also got 2 Arby's coupons good for "One free combo meal" for our raffle! YEA!!

The only thing left is 5 more pizzas and some good entertainment and we will be set!! I'm SOOOOO excited and can't wait for our FIRST Wooster walk on June 13th!! I really owe it all to Nate! If it wasn't for him, I never would have known to call the cff to get a walk started in our town. So THANK YOU NATE and TRICIA!!!
PS. Please pray for Lil' Chris. Lately I have notice a little cough starting. I hope it's nothing and goes away quickly.

"Angels in Waiting" / Be a CF Advocate

"Angels in Waiting" by Tammy Cochran

This is my new favorite song;) Thank you Phoenix's mom for posting this and for getting Tammy to come to one of your fundraisers for Cystic Fibrosis. I wish we could get her to come to our walk. Maybe someday;-)

I hope that when you watch this video that you really pay attention to the words. They mean SO much to all us CF families. I pray everyday that a cure will be found and that Lil' Chris will live a LONG, FULL, PAIN FREE life!

Tammy's brother Alan lived to 24, and her other brother Shawn lived to only 15. PLEASE, PLEASE, PLEASE DON'T LET THIS HAPPEN TO LIL' CHRIS!!! DONATE TODAY AND HELP SAVE HIS LIFE ALONG WITH 70,000 OTHER CF LIVES!! Click here to donate in honor of Lil' Chris.

You can help in another way too...be a CF advocate!

Cystic Fibrosis Caucus Co-Chairs Representative Edward Markey (D-MA) and Cliff Stearns (R-FL) will soon introduce a bill to help more people with CF participate in clinical trials. Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage. Isn't this CRAZY!?!

With nearly 50% of the cystic fibrosis population receiving benefits, this significantly reduces the number of patients able to help test the 30 promising new therapies. The bill to be offered by Congressmen Markey and Stearns will help potential new therapies for cystic fibrosis and other diseases to move swiftly from the research stage into the hands of patients who need them.
Many researches believe that a cure for CF is literally just a year or two away from us now! The ONLY way to find that cure is to have more people with CF participate in clinical trials. We need to help make this easier for them!!

Please click here and become a CF advocate! Once you arrive at the web page, you'll find that the email has already been written for you...you simply need to fill out a bit of personal info so that the email goes to your member of Congress. You can also add a personal story about CF, please feel free to mention Lil' Chris(or any other CFer you know) and the impact that his story has had on your life.

Thank you SOOOOOO much for taking 2 min. out of your day to do this for not only Lil' Chris, but ALL CFers;-)

Please leave me a comment if you participate and let the world know that you are helping make CF stand for Cure Found!!!


Wednesday, May 20, 2009

Lil' Chris makes a new Soccer Buddy:)

Tonight we had another Great Strides meeting and afterwards we went to the walk site to get some ideas for where things are going to go, etc. Then after that, I took the kids for a walk on the path, and then we stopped to take some pics. I wanted to get some pics of Lil' Chris in his CF shirt at our CF walk site since he won't be there for the walk. I don't want to risk him catching anything, esp with this swine flu going around.

I got a couple of pics with him and Ayla, but then a little boy came over and wanted to play with Lil' Chris. He let Lil' Chris play with his soccer ball. He was dribbling it pretty good, but of course I didn't get that on camera:( He was so funny, he could only kick it if it was on the path, not in the grass;) He did such a good job, he even was practicing his throw-ins!! ;-) lol

Anyway, I got talking to the little boys mom and she was apologizing for her son, but I said "No, he's fine! It's actually really nice seeing them play together! This is the first interaction he's had with another kid in a long time." Then I went on telling her about his CF and the walk and how in the winter we don't let him out much. She was very understanding and was telling me about a walk that she did at that same site!

Lil' Chris was SO happy to be playing with another kid...it just broke my heart, b/c all I could think about was "Is that kid sick? Is Lil' Chris going to catch anything? Tomorrow he is probably going to wake up with a cold and it's going to be all my fault for letting him get too close." I tried not to think about it, but it's hard! I don't want to have to worry about things like this! I want him to be able to do whatever he wants without a care in the world!

So, I took the chance and let him play with the little boy and held back my urge to say "Ok get in the car!" I'm so glad I did! He had SO much fun chasing him around and playing with his ball. He even gave the lil' boy a hug...it was the cutest thing(of course I missed getting that on camera:(

Lil' Chris didn't want to leave the little boy, but when he finally did, he kept saying "Bye bye, bye bye!" So cute:)

Now lets pray he doesn't wake up sick tomorrow;-) lol


Monday, May 18, 2009

Ayla Rolling Over Video!!

I can't believe my baby girl is growing up SO fast!! I finally caught her rolling over!! I went upstairs to get her from her nap and saw that she was about to roll over, so I went and got the camera and started video taping it. She was fighting it, but with Mommy's convincing, she finally rolled over all on her own!!! What a big girl!!

Can you believe that she is now wearing size 6 months clothes?!? It killed me to pack up all her newborn clothes, and now I have to pack up all her 3 month clothes:( Where did my lil' baby girl go?

This is Ayla wearing her first 6-9 months outfit and trying to sit up in the bouncy seat ;(......

Saturday, May 16, 2009

Ayla Pics & Video / CF Bracelets

Here are some pics and video of my sweet Ayla at 3 1/2 months old! She is growing more and more every day:( I can't believe she is ready for size 3 diapers and is growing out of her 3 months clothes:( Where did my baby go???? She's cute as a button though:) I put her in her first 6 months outfit tonight and it fit perfect! :(
She is starting to laugh more and more:) She loves to kick her lil' feet in her bouncy seat...well, pretty much anywhere she is;-) She is even grabbing her lil' toys that hang from her bouncy seat!! The other day I caught her checking herself out in the mirror...here we go!!! ;-) I see her teen years approaching too fast;-) lol In one of the videos she has the hiccups, so cute:) And can you believe that she has started rolling over!!! She can roll from her belly to back. When we go to get her in the morning, sometimes she is on her back:) I haven't caught her doing it yet;-)

This weekend my niece is selling string bracelets that she made and ALL the money is going towards a cure for her cousin Lil' Chris. Isn't that SOOOOO sweet of her?!? She does a wonderful job making bracelets!! She normally does all different colors, but she is making special CF ones...purple and white. Here is a pic of a couple of them...

If you would like to buy some, leave me a comment saying so or send me an email. All money goes towards a CURE for CF!!!

Thursday, May 14, 2009

Order on MediSimpleShoppe to help CF/Lil' Chris Video

Cystic Fibrosis Awareness Month
15% of all proceeds from Pari Products plus 10% of all proceeds from everything else will go to the
Cystic Fibrosis Foundation
For the Entire Month of May!
Shop Now... and Help Find a Cure for Cystic Fibrosis!!
www.cff.org for more information on cystic fibrosis
Lil' Chris is counting his Mickey Mouse cheese 1 to 3 all on his own right now:) So cute!!! Earlier I came down stairs from putting Ayla down for a nap and this is what I saw...

Wednesday, May 13, 2009


Ok, maybe not gold...but it was a successful fundraising day;-)

Our picture with the newspaper went ok. It was really windy and cold and we were in our CF t-shirts. I'm kinda afraid of what it's going to look like. I knew I should have put my hair in a pony! ;) Oh well. What matter most is the words that's going to be said in the article. Getting awareness out about CF is the most important thing. I can't wait to read it! The photographer didn't say when it was going to be in the paper, and we don't ever get the paper, so if someone sees it let me know!! I'd like to buy one for Lil' Chris' scrapbook:) Jack, Alma's son was there, and Mary and I held a pic of our CF kids. I think it is going to be really cute!!

Afterwards, I went to tons of places to try to get donations, sponsors, and/or coupons for raffles. I didn't get any huge sponsors or donations, but I was able to get a lot of coupons and gift certificates for our raffle the day of the walk!! I tried to get a huge sponsor from the Cleveland Clinic, but they already are at their max for this year. She took my info and hopefully they can next year. I asked her when I should contact them again for next years walk and she said the end of this year. I will definitely do that, b/c that would be huge for us!! They currently are sponsoring Relay for Life, which is Great!! They display a huge 4 or 6 foot banner I think at all 3 or 4 locations! I told her that we do 4 foot banners as well! I really hope we can get them on board.

I went to our pediatricians office to see how the Pin-ups were doing and THEY WEREN'T DOING THEM!! I was SO disappointed:( One girl said they couldn't collect money or something like that. Oh well. I thought that our dr. had asked that day I was there if they could do them and they said yes, but I guess not. Anyways, I left a sponsor form for our dr, so hopefully she will donate. I also left a sponsor form at my OB's office. She was the one who delivered Lil' Chris and she was there when we found out that we were both carriers and she was the one who tried to get us to go to counseling before Lil' Chris was born. Hopefully she will donate, she is such a sweet lady. Both dr's are very sweet and wouldn't surprise me if they donated or came and actually walked!!

One of the many places I went into was Family Pools & Spas. Don't ask me why, something made me...fate, I guess. As I started to tell them about CF, the manager stopped me and said we already do that! As she was bringing me to the counter to show me, I thought maybe it was for something else. But low and behold...it was for CF!! I was FLOORED!! I couldn't believe they were doing Pin-ups for CF in my town and I didn't know about it! I don't think any of the CF moms in this area knew about it!! Not only that, but a percentage of the BioGuard products sold goes to CF!! She told me that ALL their stores do this!! How exciting for CF!!

Anyway she went on to tell me that Emily(who started this foundation) was diagnosed with CF at age 9. She was reading some Babysitter Club books at the time and one in particular stuck with her. It was about a girl who raised money for local hospitals by biking. Anyway, Emily thought she could do this for her disease! So that is when she started getting pledges for laps. She is a great swimmer. Her original goal was $3,000, but instead raised $60,000!! Since then, she has raised 1.3 million dollars!!! She started a non-profit organization called Splashforcf.org and also teamed up with the CFF and started Lapsforcf.org. Check them out and join! She has some great videos and pics on there. Click here for Emily's story. I can't believe all that she has done and she is only 16 years old...AMAZING!! This is something that I would LOVE to do for Lil' Chris!! Here is a pic of their donation jar and a stack of their Pin-ups.

Ok, back to all the coupons and things I got for raffles:
  1. Papa Johns is going to donate 5 pizza's for the day of our walk. They open at 11, so she said they could bring them between 11 & 12. I'm hoping this can just be our second round of hot pizza's or something. She also said she is going to try to throw in a couple more if she can;-)
  2. Gary's Liquor Store is going to talk to their water vendor to see if they can donate water bottles for the walk. I have to call him back on Friday.
  3. Wal-Mart said they don't do gift cards or anything anymore, but we could do a fundraiser outside their front doors to raise money...kinda like they do for girl scout cookies. Also, she gave me a paper to fill out to possibly get approved for a grant, maybe $1,000!!! I'm going to fill that out and get it back to her soon. Pray we get this grant!!
  4. Both Burger King(by Taco Bell) and Quiznos said that they were out of coupons and that they would give me a call when they get more.
  5. Lowe's gave me a fax number to send a letterhead with my request. The lady who I needed to talk to was too busy:(
  6. Tractor Supply & Co. gave me a picnic basket, a t-shirt, 2 measuring cups, a tape measure, and 4 hats to give away in the raffle!! Yea!! It's always the places you least expect that give stuff...lol:)
  7. Taco Bell gave 6 "2 free items of choice" coupons
  8. Pizza Hut gave 2 "1 free large pan/item" coupons (we might have to use them for the walk if we can't find any other food donors;)
  9. Red Lobster gave 4 $5 gift certificates
  10. Buffalo Wild Wings gave 4 "6 free wings" coupons and 3 $5 gift certificates!!
  11. Tumbleweed gave a $20 gift card!! YEA!!

So altogether, I got $55.00 worth of gift certificates, 12 coupons to give out as raffle prizes, a picnic basket full of stuff to give away as a raffle, and 5 pizza's donated for our walk!! Not bad for a couple of hours work;-)

Special thanks to Daniel's dad for setting up our picture with the local newspaper, and for getting 50 lbs of fruit donated for our walk!! He gets my "WAY TO GO" award!!! Great Job!!


PS. BTW, I went to our local CiCi's and THANK GOD the good manager was there!! He found the Pin-ups and he got the flyer off of the community board and he said that they would start doing them TODAY!! It was really my own fault for not giving them to him directly in the first place. But I didn't really think it was that hard to say "Hey some girl dropped these off". Oh well. Lesson learned.


Hey All!! Kellee wanted me to post this:

Hey, I need you to do me a mega huge favor!!!Please post on blogger explaining that I had to make my blog private due to stalker lady and I need all of my followers or anyone that wants to read to please e mail me letting me know.Kelleenicolejones@yahoo.com I also need your e mail address
I don't wanna lose my bloggy friends =(

I hope you email her, b/c she is a GREAT blogger and GREAT friend!!

Today at 11:30 me and 2 other CF moms are getting our pics taken for the newspaper!! YEA!! It looks a little cloudy right now, but hopefully it will clear up soon.

After I get done with the pics, then I plan on going out and doing some fundraising. I haven't done too much lately, b/c I wanted to spend time with Lil' Chris. I guess that is the hard part...I want to fundraise for him, but I feel like I'm missing out on my time with him!! I already feel like I don't see him enough with working full time and me and my hubby working opposites of each other! So lately, when we both happen to have off, I've just wanted to spend the time with them both. But then I feel guilty that I didn't take advantage when Chris was home and go out and fundraise:( It's so hard. But today I'm going to. I HAVE to!! I can't put it off any longer, b/c our walk is exactly one month from today! YEA!!

Oh, I forgot to tell you...I got 3 CiCi's Pizza locations to do Pin-ups for CF!! I talked to Erica(our GS event planner), and she said she was going to try to get all 11 of the CiCi's in this area to do them, since all the money will go to our walk and not all the different chapters. I haven't heard back, so I'm guessing that it's too late for this year. Next year I am definitely going to get a jump start on this and hopefully get all 11 stores to do them. They have been doing them for about a week now. I checked the Canton store, and they had 11 Pin-ups up, and the Massillon store had about 5 up. Then I checked the Wooster CiCi's(the one where we do our Dough Raisers) and to my surprise...THEY DIDN'T HAVE ANY UP!! I was shocked!! This is my home town!! I brought them a flyer to put up to help raise money and the assistant manager acted like he had no idea what I was talking about!! HE was the one I gave the Pin-ups to!! He said he could put the flyer up on their community board. I was SO mad, b/c that is not what it was for and their community board is in the back by the bathrooms!!! I new I shoudn't have given those pin-ups to HIM that day, but the good manager wasn't there and I wanted to get them started! So hopefully when I go their today the good manager will be there. After all, HE was the one who got me started on doing the pin-ups. He was the one that suggested we do them in all 11 locations!! I will be SO mad if that assistant manager threw them away or never even told the manager about them!! They REALLY need to get a new assistant manager!! I've had problems with this guy before!

I'll let you know how I make out:)
PS. What do you think of the new header pic of Lil' Chris with the suitcases?? I forgot, I was going to put that one up a long time ago. I'll put up his 2 year pic on his 2nd birthday next month:)

Tuesday, May 12, 2009

Newspaper Pic Tomorrow

Tomorrow us 3 CF Moms in this area are getting together at the place where we are going to have our Great Strides Walk, and a photographer from our local newspaper is going to take a picture of us holding 8x10 pics of our son's. The article is going to talk about how the CF moms are holding pics of their CF kids, b/c the kids can't be together b/c of cross contamination. It's also going to talk about when and where our walk is going to be. I'm SO excited!!

I sent the commercial to our local TV station, but haven't heard anything yet. I'm not even sure if I will hear anything! They may just start playing it! I'll have to keep an eye out;-)

Pray for good weather tomorrow:)
PS. I just thought about the shirt I have...a while t-shirt with a pic of Lil' Chris doing his Vest and underneath it says "I Love Lil' Chris". Do you think I should where this instead of holding the pic?? Let me know Alma and Mary;-)

Sunday, May 10, 2009

2nd Mother's Day with Lil' Chris & First one with Ayla:)

Here are some pics of our day. Sorry they are a little bit blurry, we forgot our camera, so I had to use my cell phone for the pics and videos. They are still cute;)

I had a great 2nd mother's day with Lil' Chris and a great first mother's day with Ayla! It started off with Ayla crying at 5am, soaked the crib, and was hungry. It was GREAT!! I guess it's true what they say, mother's never really do get a day off;-) That's ok, I like spending time with the kiddos;)

When everyone woke up, they all gave me a Dairy Queen Cake, my favorite(we didn't eat it until night time though;-) Then they took me out to breakfast and then off to get Lil' Chris' FIRST HAIR CUT!!! It was SO cute!! He did such a GREAT JOB!! I was SO very proud of him!! He wanted to hold Daddy's hand, and needed a hug at one point, but he never cried!! Such a good boy:)

Then we went over to Babies R Us to get pics done. We got Lil' Chris' 2 year pics done, Ayla's 4 month pics done(both a little early;) and then we took our FIRST FAMILY of 4 PIC!! The kids did such a GREAT job!! All the pics turned out GREAT!! I'll have to share them later, b/c Chris will have to scan them in.

Then we came home for a little bit, then they took me out to dinner and then we went food shopping. When we came home, Lil' Chris somehow climbed into the bucket of toys all by himself while we were upstairs with Ayla. We came down, and to our surprise, he was standing in it throwing all the toys out! It was SO cute!!

Overall, I had a GREAT Mother's Day!! Thanks Honey and Thanks Lil' Chris and Ayla for the best 2nd Mother's Day Ever!!

I hope everyone else had a great Mother's Day too!! HAPPY MOTHER'S DAY!!

Saturday, May 9, 2009

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.


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!

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


Friday, May 8, 2009

CF Commercial - Final Cut

Sorry I haven't been blogging much lately, but we have been concentrating on getting this commercial done since our walk is fastly approaching.

This is the final cut, so hopefully everyone likes it. I'm going to send it today. We had to take out the music, b/c you couldn't hear my voice over it. That stink, b/c I really liked that song.

Let me know what you think!


Monday, May 4, 2009

CF Commercial in the Making

Here is the commercial we have been working on. I'm SO glad that our local cable company said that they would do a 30 second commercial for us for free. Let me know what you think before I send it to them.

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.

Baby Ethan

Remember when I posted about baby Ethan? Click here if you don't.

Well, his mommy just put an "I miss you post" on his blog. Please click here, and leave her an encouraging comment. I can't begin to imagine what she and her family are going through. My heart goes out to them.

Email from CEO of CFF

I got this email today from the Ph.D.President & CEO of the Cystic Fibrosis Foundation. I found it encouraging to keep pushing for donations for research to find a cure. We can't let this economy keep us from a cure!! Our CFers need it pronto!!

Thank you in advance for participating in the GREAT STRIDES walk. Your support is critical for advancing CF research that will lead us to a cure.Right now, we are funding the most promising CF research ever, but a decrease in funding could affect the Foundation's science and medical programs in the coming year. We can’t let that happen. Our ability to keep CF research progress on track depends on the success of GREAT STRIDES.In order to give you enough time to meet or exceed your goal, we are extending the deadline for GREAT STRIDES donations to June 30. For tips, tools and ideas to help you reach your goal, visit your online fundraising toolkit.Every dollar counts in our search for breakthrough treatments and a cure. On behalf of all those who are affected by cystic fibrosis, thank you for everything you do.Sincerely, Robert J. Beall, Ph.D.President & CEO Cystic Fibrosis Foundation(800) FIGHT-CF

I just want to say "THANK YOU" to everyone who has been raising money for a cure for CF. You are all truly AMAZING in all that you do!! My family and I THANK YOU from the bottoms of our hearts!!!