Friday, October 30, 2009
I just put a link to the Kalahari video post up top of this blog, b/c he asks to see it EVERYDAY and I got tired of searching for it each time. Now it will be nice and easy to get to:)
Ronnie and Christina had a great post the other day on their blogs about CPT(Chest Physical Therapy: what we used to do to Lil' Chris before we got the Vest). I would show you a video of us doing CPT to Lil' Chris when he was a baby, but I don't think I ever took any, b/c it was too depressing. I didn't want that memory...it was a hard time for my husband and I to have to pound on our lil' baby like that. I thank God everyday that we were fortunate enough to get the Vest for Lil' Chris. It has made all of our lives soooooo much easier! Click here to see his last Vest video, and click here to see Ronnie's post about CPT and he also included Christina's post:) In Christina's video...I think it is around 13 minutes in that it shows her doing CPT on her son(what we used to do). Just watching it brought back all the memories of my arm killing me!!!
Update on Lil' Chris' cold....it is all gone, even his cough thankfully.....but unfortunately Ayla's nose started running yesterday:( I'll keep you posted.
Good news....we raised $200 for our first month of doing Jeans 4 Genes at work!! YEA!!! 3 more months to go, if we keep this pace up, that means we will raise $800 for a CURE for CF!!! Praise God!
We can't wait for Nov 12th, we are going to the 2nd Annual Volunteer Appreciation Reception which honor's our chapter's outstanding volunteer leaders with Robert J. Beall, Ph.D. as the special guest. He is the President & Chief Executive Officer of the Cystic Fibrosis Foundation. We are going to hear about the latest scientific advancements and progress we're making in the fight against Cystic Fibrosis. I'll share any good info I get;-)
Have a GREAT day!
Monday, October 26, 2009
Last night we carved a lil' pumpkin with Lil' Chris for the first time! He wasn't too sure about it at first, but then he got the hang of it and it wasn't as gross to him anymore....well, he still thought it was gross...he refused to touch the insides with his hands, but he still had fun:) Too funny:)
Hope you enjoyed the montage,
PS. I didn't forget about the birthday/dedications pics...they are coming soon;-)
Saturday, October 24, 2009
She is getting into all her big brothers toys now and she is getting UNDER some of them...the slide;-)
We've raised $130 in the first 3 weeks of doing Jeans 4 Genes at work!! Everybody at work has always been so supportive of Lil' Chris. We greatly appreciate everything!! 14 more weeks to go!!
Lil' Chris' cold is getting much better!! His nose isn't running nearly as much as it was, thank God! He was quit cranky today, but who wouldn't be after not getting much sleep for 2 days. Last night he did sleep through the whole night though...Mommy was VERY grateful;-) His cough has gotten a little bit worse unfortunately:( Needless to say...he is doing more Vest treatments to help break up that mucus in his lungs. Hopefully he won't need an antibiotic, but I have a feeling he might need one if it doesn't clear up in a couple of days:(
I'll keep you posted. Please pray that the rest of us don't get sick too.
BTW.........remember that diet blog that I started back in April??? Welllllllll........I've lost 35 pounds!!!!! YEA!!!! I'll post another "after" pic soon;-)
Friday, October 23, 2009
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,
Monday, October 19, 2009
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;(
Sunday, October 18, 2009
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:)
Saturday, October 17, 2009
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...
PS. Coming soon...Birthday and Dedication pics;-)
Sunday, October 11, 2009
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???
Saturday, October 10, 2009
Here the individuals of my lil' Tigger and Piglet;-)......
Tuesday, October 6, 2009
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!
Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
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...
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.
United States Senator
You can make a difference too! Become a CF advocate today!!
Friday, October 2, 2009
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
Guess what Lil' Chris can do now??? Ayla is doing something new too. Can you guess what it is???
Thursday, October 1, 2009
Ronny had a GREAT post the other day on his blog. When doesn't he have a great post though;-) The post was actually from his girlfriend, Mandi. Click here to get the whole post on his blog.
These are some very interesting things that I didn't know(except about the smoke;) and that I feel ALL CF families should know, especially us who have young CFers who can't tell us when their lungs hurt. Here is the post from his blog....
Caution: Harmful Fumes Ahead (for CFers)
On Thursday evening, I decided to paint my nails. I'm not much of a girly-girl, so I rarely partake in this form of pampering, but for whatever reason, I decided Thursday night was the night. Ronnie and I were watching TV, I jumped up, grabbed the the nail polish bottle, plopped back down next to Ronnie and began painting. Two nails in, Ronnie moved to the other chair. I didn't think much of it. After finishing my manicure and waving my hands in the air (who knows if that actually dries your nails faster), I moved to get closer to Ronnie in his newly selected location. As I started to get close, Ronnie lovingly said, "just so you know a little something about me," he paused, "nail polish really irritates my lungs. "IT DOES?" I replied, feeling a little bad for not knowing. How would I have known? I never paint my nails. It doesn't bother my lungs. I just didn't think about it. But after he mentioned it, it seemed like a no-brainer.
I decided to compile a list of things I know of that irritate Ronnie's lungs, in case you have little ones that can't/won't speak up:
-Smoke - this seems like an obvious one. And sure, if someone is blowing cigarette smoke in my face, I notice, but there have been many occasions where Ronnie will say, "someone's smoking, let's move" and I haven't even smelled it. This goes for other kinds of smoke also. Smoke from cigars, pipes, bon fires, burning meals, etc. After a night with a lot of smoke around, Ronnie will often cough up blood.
-Car fumes - When we're running or walking on the sidewalk of a busier street, Ronnie often complains of how the car fumes make his lungs feel and it often irritates his lungs making him cough more.
-Air fresheners and scented candles - Bathroom aerosol sprays, plug-ins, regular old candles, these often make Ronnie's lungs feel irritated and "itchy" in his words. If you're looking to "freshen" the air a little try potpourri.
-Perfume - If someone has too much perfume on (not just when spraying it) it really tightens up Ronnie's lungs. I'm not sure there's any way around this other than cutting back on the perfume usage. I do wear perfume and Ronnie has yet to complain, but when I wear it, I go light.
These are the only offenders that I know of. I didn't realize how much more sensitive CFers' lungs were. I hope this list helps.
If you have any others, please leave them here.
P.S. If you haven't made it over to www.naturemade.com yet to see Ronnie's story, check it out. I'm super proud of him :)
Click here for another great post by Ronny about being a good CF mom:)
Here is one more great post by Ronny about making the decision to have more children if both parents are CF carriers. Be sure to read all the different comments too;-)
I think that's enough for now...LOL ;-) Let me know if you have any questions,
PS. Lately on Young & the Restless(yes, I'm addicted to a soap opera;) they have been talking a lot about organ donation. I'm so glad that they are, b/c it is SOOOOOO important for CFers. Most CFers will need a double lung transplant when they get older. Please, Please, Please become an organ donor TODAY. Don't wait another minute! You could not only save 1 life, but you could save 7 lives!! Isn't that a great way to be remembered? I hold comfort in knowing that someday I may save a life or two or 7. 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.
Ok, now I'm done...for real this time;-)