Lil' Chris has a cold;-(

Lil' Chris has a cold unfortunately:( It started a couple of days ago. Not sure where he got it from. We took him out shopping a couple of times, so maybe he picked something up while we were out. We make sure to sanitize all the time, but with his low immune system, he catches things so easily. The last 2 nights he has not slept much:( Hopefully he gets a good nights sleep tonight.

He hasn't been coughing too much, only when he does his Vest...which he usually never does. That's a good sign...the Vest is working! He's just not sure what to do when he coughs it up though. He says to us "Spit it out?" but then he won't spit it out. It's good that he knows he is supposed to though...he'll get there eventually. He's still pretty young to be spitting out his mucus, I think. Little does he know that he will have to spit his mucus out daily for the rest of his life. Or...maybe he DOES know, that's why he won't do it now, b/c then I'll want him to do it ALL the time;-) He's just too smart for us;-) lol

We have been keeping Ayla in separate rooms from him so that she won't catch it. Chris and I have been sanitizing every time we wipe his nose, or even touch him or something that he was touching. Hopefully we don't all get sick too.

Please pray that it is just a cold and that it doesn't turn into something worse like pneumonia, the flu, or even worse...the H1N1 flu.

Thank you for your prayers,
M

CF Dr. K is leaving;(

We just got a letter in the mail saying that Lil' Chris' CF doctor will be moving away to be closer to his family;-( He has been with Lil' Chris from DAY ONE!!! He was the one who passed me a tissue as he gave me the worst news of my life...Lil' Chris' diagnosis of Cystic Fibrosis. Going to the clinic won't be the same without him:( He was such a nice doctor and always made sure he found an answer to all my questions. I will forever think of him when I think back to when Lil' Chris was diagnosed. He will always have a special place in my heart.

A new CF doctor is coming to our clinic now. She has over 15 years of CF clinical care and CF research experience. I'm not sure if she is getting all of Dr. K's patients or not. I guess we'll have to wait and see what they say when we go to clinic next month. I'll make sure to get a pic of Lil' Chris and Dr. K before he leaves. The letter says he will be moving in mid 2010, but you never know, it might be sooner. I just hope that whatever doctor Lil' Chris gets does as good a job as Dr. K did. Lil' Chris has done amazingly well for his first 2 1/2 years. It's all thanks to Dr. K!!! He will truly be missed;(
M

Raised $80 in just 2 weeks!! YEA!! Wanna help?

Yea we raised $80 in 2 weeks for a CURE for Cystic Fibrosis!!!

My boss at work has approved us to do Jeans 4 Genes at work for the whole 4th quarter!! That means that any associate that wants to wear jeans on our slow days(Mondays, Tuesdays, and Thursdays) can donate $3 to wear jeans and $2 to wear sneakers(or tennis shoes as they say out here...LOL;) for the months of October thru January!!! It's been 2 weeks and we have already raised $80!! I can't wait to see the end result in January;-) Thank you to all my fellow associates who have been participating:) We are getting closer to a CURE every day because of you:)

For my family and friends...if you would like to help out and do Jeans 4 Genes at your work for Lil' Chris, please comment on this post or email me and I can set you up with flyers and stickers:) I would love to get more help in raising money to help find a CURE!!

We need that CURE ASAP!!!! 2 of my fellow CF mom bloggers have been in the hospital recently with their little ones. Please pray for Ashley as she is out of the hospital now and has lots of treatments, and pray for Reilly who hopefully will get out of the hospital Monday but will also have many at home treatments. These 2 little girls have amazed me with all that they have gone thru and yet always have a smile for the camera. I can't imagine Lil' Chris having to stay in the hospital for 4, 5, or 6 days! I keep thinking about it, but my husband tells me not to. He says we will deal with it when the time comes. I pray it never comes, but I know it is inevitable with this horrible disease. . . unless we find a CURE! So help me out everyone! Ask your boss today if your work would be able to do Jeans 4 Genes. It can be once a week or once a month! Every penny helps! If your work is already casual or aren't allowed to wear jeans, then click here for some other fun fundraising ideas:)

Please let me know if you have any questions and thanks in advance for helping us get closer to a CURE,

M

New Things The Kids Are Doing:)

Since no one guessed what new things the kids are doing....lol...here it goes....

Lil' Chris has been peeing standing up the last couple of weeks!!! YEA!!! He is doing a GREAT job for his age, I think:) Lately he has been having accidents only when he naps, is doing his Vest, or when he is eating in his high chair. Not sure why??? We are working on it though. He doesn't do it every time, just sometimes. He usually never has any accidents while he is playing or watching TV. The other day he woke up from his nap dry!! That's a good sign!! The only problem is that he is only learning when he takes a nap when I am home. My hubby still puts him in a pull-up and we have the sitter put him in a pull-up so she doesn't have to clean up the mess. He'll get there eventually. I gotta say...it has been sooooo nice saving money on all those diapers!! Having 2 kids in diapers was rough! I can't believe they are like $42 a box now!! Crazy!

Lil' Chris can also catch a ball now!! Daddy did a great job teaching him. He caught 8 in a row for me the other day! What a kid:)

He also started bossing around Ayla...I didn't think this started so young!! LOL If she grabs a toy of his or something that she is not allowed to have, he says "No Ayla!" and takes it from her. He is so cute:) He is such a good big brother...he gives her toys that she can play with and he helps mommy out by taking the small toys away from her so she won't choke. The only problem now is that he keeps giving his food to her. He sees us giving her food, so he thinks he can too:)

Guess what word Lil' Chris picked up..."crap"...I don't know where he got that from;0 Ok, it was me;( It's cute hearing him say it every time he drops something. LOL

I got him to finally eat some Mac n Cheese the other day!! I tried it again and he wouldn't eat it:( I'll keep trying. We had a dietitian come to our house to help us to get him to eat more foods. Hopefully it helps. He was drinking the Resource Breeze Orange juice(250 calories), but now he won't touch them. Weird. Sometimes he will drink a Scandishake(600 calories). We are still working on getting him used to them so he can get extra calories.

Ayla can now clap her hands! YEA!! It's so cute. I tried to get it on camera, but no luck. Someday I'll get it:) She is now eating more foods. She loves pretty much everything!! Whatever Lil' Chris doesn't finish eating, we give it to her. Sometimes this trick will make him want to eat more;-) Smart huh?! lol

I finally dug out the bouncy seat for Ayla. She LOVED it! She isn't bouncing yet, but she loves to swing in it! Lil' Chris LOVES to push her;-)

Ayla is rolling around more and more everyday! One minute she's here, the next minute she's way over there!! Too funny:)

Guess what??? Ayla has another tooth coming through! This one is the top front left tooth. The right one is about to come through any day now:) I can't wait, b/c I love it when babies only have the front 4 teeth;-) lol

Enjoy the video...
M
PS. Coming soon...Birthday and Dedication pics;-)

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

Day 2 & 3 of our Summer Vacation

Here is the continuation of our Summer Vacation pics...I told you I took a lot;-)

Photo and video editing at www.OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

Click here to see Day 1.
I hope you enjoyed them. Coming soon...new things the kiddos are doing now. Can anyone guess what they are???
M

New Halloween Header Pic

What do you think of my new header pic? We went and got the kids Halloween pics done the other day and they turned out sooooo cute:) I'll keep it as the header for this month and then maybe I'll get their pics done again;-)

Here the individuals of my lil' Tigger and Piglet;-)......

What do you think????

M

'09 Great Strides Results/Research for a CURE/Become a CF Advocate

I got word from Erica that our 1st annual Great Strides Walk in our town this past June raised $7,400!!! Not bad for our first year. Our goal was originally $5,000, but we upped it to $10,000. We didn't quite make it this year, but hopefully next year we will. Lil' Chris' team raised $4,440!!! Woo Hoo!!! We more than doubled what we raised last year!!! YEA!!!

THANK YOU EVERYONE WHO DONATED IN HONOR OF LIL' CHRIS! WE GREATLY APPRECIATE EVERY CENT!! There are over 30 drugs in the pipeline right now and 2 are really close to being released. Hopefully one of these will be the CURE!!

Here is an email about the progress of research for a CURE...

Dear Lil' Chris' Mom,

Every year, we commit millions of dollars to CF research and the search for a cure. With your support, CF Foundation-sponsored scientists continue to break new ground.

Our biotech collaborator PTC Pharmaceuticals just announced their potential CF drug ataluren, which has shown promising results in earlier clinical trials, has moved into Phase 3 testing.

CF patients who took ataluren (formerly PTC 124) in Phase 2 clinical trials showed improved lung function and decreased cough. The results suggest the drug improves the function of the faulty CFTR protein in people with CF – the underlying cause of the disease. Phase 3 trials will further evaluate the effectiveness and long-term safety of this potential therapy.

Your contributions allow us to invest in high impact research that is bringing us closer to a cure.

If you have CF, you can help by participating in the clinical trial. Visit the Foundation’s Web site to learn about this study and find out how to get involved.
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


Thanks again everyone for donating. As you can see, your money is being put to good use. One other way that you can help that doesn't cost anything but a few minutes of your time is.....to become a "CF Advocate"! Click here and then click "Sign Up" to receive the CF advocacy Newsletter and Alerts, and then click on "Take Action Now". Then under US Congress, click on: Action for October: Ask your Senator to support expended access to clinical trials, fill in the blanks and hit SEND.Your Senators and House members for your state will receive your email and will know that they need your support and that you need them to TAKE ACTION NOW in Washington. Please feel free to add a little story about Lil' Chris, but you don't have to. The words are already there for you. You just have to send it to get the awareness out there to those who can make a difference in the CF community. **Please try to never write or say CF~ always use Cystic Fibrosis as some may not be aware of what CF is.**

I have recently become a Network Advocate for CF and I am LOVING the difference I am making with my emails to our Senators. I got a GREAT response the other day from Senator Sherrod Brown saying that he is going to be a co-sponsor...

Dear M:

Thank you for getting in touch with me about access to clinical trials.

I agree that individuals with rare diseases should not be denied eligibility for the Supplemental Security (SSI) program based on the stipend they receive for participating in a clinical trial. Our nation should be encouraging greater participation in these trials, not penalizing those who participate.

Senator Wyden has introduced legislation to exclude rare disease clinical trial stipends from SSI income calculations. His bill, the Improving Access to Clinical Trials Act (S. 1674), was introduced in the Senate on September 15, 2009 and referred to the Committee on Finance. I am proud to be a co-sponsor of this important legislation.

Thanks again for getting in touch with me on this issue.

Sincerely,

Sherrod Brown
United States Senator

You can make a difference too! Become a CF advocate today!!

M

Chris' 30th Birthday Montages

I made these montages and forgot to post them...oops;) The first one is when Chris opened his birthday present and realized that we were going to the Kalahari(indoor water park) for his 30th birthday;-) Yeah, he pretty much had the same reaction when I told him I was pregnant with Ayla. I should dig up THAT video!!! Anyways...this video cracks me up how many times Ayla tries to put the paper in her mouth;-0 LOL

The second montage is of Ramseyer Farm. It's our lil' tradition to go there on Chris' birthday every year. It's fun...Lil' Chris had a BLAST!! Somehow the camera got switched to black and white half way thru...sorry about that;-) lol

Photo and video editing at www.OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

Guess what Lil' Chris can do now??? Ayla is doing something new too. Can you guess what it is???
M