Getting Closer to a CURE/Update/Vest Pics

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

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

Photo and video editing at www.OneTrueMedia.com

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

Dear Lil' Chris' Mom,

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

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

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

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

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

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

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

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

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

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

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

Update & Video of Him Playing in the Backyard

I just wanted to let you all know that Lil' Chris is all better and has been for the last couple of days...thank God!! I still never heard from the dr.'s office about the test results:( I guess it was nothing serious!

Here is a video my hubby took before Lil' Chris got sick. He loves playing with his swing set!! We have such awesome neighbors to give it to us!! I didn't put music on this video, b/c he talks in it and laughs a lot so turn up your volume if you want to hear him...I just LOVE his laugh!!!!!!!

Photo and video editing at www.OneTrueMedia.com

Hope you enjoyed it as much as I did;-)

M

CF Poem & Tips & Tricks Post from Casey

I found ANOTHER new CF blogger buddy through Ronnie and Casey...thanks guys:)
Her name is Alexandria and she is an adult CFer. Click here to check out her blog and show her some bloggy love by leaving her an encouraging comment:)

She had this awesome CF poem on her blog that I thought I would share with you all...

CF is a game...A game in which there are definite winners and definite losers.
The losers scoff at regular treatments, hospitalizations, and medications
They, in turn, receive the assurance of sickness, illness, even death.
Their counterparts, the winners, take their medications, inhalations, and exercise.
These are the participants whose eyes are so fixed on doing what it takes to win and feel good, they don't mind the daily routine.
All because they long to control their CF, instead of letting it control them.
Living to fight,Instead of fighting to live.
This is their mantra.
The game is CF
The goal is to win
The reward is life
LET'S PLAY !!!

I hope you enjoyed it as much as I did:)

Casey had a REALLY good post on his blog today that I wanted to share with you all too. I love learning new tips and tricks:) Thanks Casey!! Click here to read some great advice for not only adult CFers, but for CF moms like myself too;-)

Ronnie also had a great post today too about supplements for CFers and stresses how important it is to do treatments and exercise! Click here to read it!

I gotta be honest...learning tips and tricks to help better my son's life is such a high for me!! =)
M
PS. There still is time to donate to our Great Strides to help find a CURE for CF!! Click here to donate today! My personal goal is to raise $5,000 by the end of the summer. So far we are almost to $4,000!! Praise God!! Thanks again to all those who have already donated!! We love you:)

YEA! NO MORE FEVER!

His fever managed to stay away the past 24 hours YEA!! He is acting like his good ol' self now:) He is wanting to eat more now too, THANK GOD!! I think he is making up for not eating much the last 2 days:) Looks like I'm going to have to do some shopping;-)

The only thing now is that he sounds different! It sounds like he's got a stuffy nose, but he doesn't! His nose isn't running and nothing came out when I suctioned it! IDK what it is, but I can definitely hear it in his voice and when he breathes. It must be dripping down his throat or something. It's like he can't breathe if he closes his mouth! Poor lil' guy, if it's not one thing it's another : ( I just hope that he is not starting to get any sinus issues like CFers tend to get.

Thank you to all for all your great advice and help the last couple of days:) Thank you also for all the prayers. We greatly appreciate them:)
M

Quick Fever Update

He took a very long nap this afternoon and when he woke up he felt much better! His fever FINALLY broke!! His temp was 98.2! YEA!! He still did not want to eat much, but he DID want to drink his milk though:) He was very cranky, but I was able to get him to do his Vest tonight:) YEA! We stopped the Augmentin, but he is still having those foul smelling diapers:( It'll probably take a couple of days. I know that one of the symptoms of CF is foul smelling diapers, but until now Lil' Chris never had that! Weird!

I'll keep you posted,
M

New Blogger Buddy: Casey

Hello All! I just came across a new blog buddy thanks to Ronnie:) His name is Casey and he is 18 with CF. His blog is called aCASEYofCF....very clever I thought=) He has some really cool info on there that amazes me! You gotta watch his video on the left side of his blog(you have to scroll down a little). It's called "What makes me cough". He has some good exercises that he does to help him cough out the mucus. Lil' Chris isn't to the point yet where he coughs the mucus out, but this video helped me to teach him some tricks for when he is ready:) Thanks Casey and thanks Ronnie for introducing me to Casey!! =)

To check out their blogs, just click on Ronnie's name above and click on the name of Casey's blog above. Let's show some bloggy love to Casey:) I have a feeling we can all learn a lot from him:)
M
PS. You should check out Ronnie's blog too, he has some pretty cool videos on there...good stuff:) Please pray for him as he is in the hospital.

No C-diff!!! YEA!!!

HOORAY!! Lil' Chris does NOT have C-diff!!! We still aren't sure what's causing this fever that he STILL has though;( We will get the rest of the test results on Monday hopefully. I'll let you know when I find out. Hopefully it's nothing else that could be serious, and hopefully this fever goes away real soon!

He had a fever all through the night and still has it. It was 100, so it has come down some. We are still giving him Tylenol. He DID eat a little bit this morning, so that's a good sign:) He is drinking, so we are not too worried about dehydration at this point. I'll keep you updated. Do you think it's wrong that we aren't doing his Vest? It's not a respiratory problem where he NEEDS the Vest, so I think it's ok for now until we find out what's going on or until I think he can handle it.

Thank you to Mary for reminding me where I have heard of C-diff before:) Now I remember Alma telling us what a hard time Jack had with it TWICE and how he was hospitalized for a while! I'm so glad now that Lil' Chris' test came back negative and he doesn't have C-diff. Huge relief! But now I worry it might me something else, like what? IDK. I don't think he could have picked up a virus anywhere! We didn't take him anywhere except outside to play in our yard!! I just pray that whatever it is, it's not bad and he can recover from it quickly.
M

Back from the Pediatricians/No more Fever! Yea!

He fell asleep on the couch watching TV. We unfortunately had to wake him up to take him to the dr.s :(

We are back from the Pediatrician and Lil' Chris is doing better, but still not himself:(

The dr. said to stop the Augmentin, b/c she wants to check a stool sample for C-diff. Apparently you can get C-diff from antibiotics. Even though he has taken Augmentin many times before, she said it can happen at any time. I'm not exactly sure what C-diff is, so I may have to do some research on it. Does anyone have any experience with C-diff? The dr. said that if he does have it, then he will be more likely to catch it more often when he is on antibiotics. Our reaction..."Oh great! He is always on antibiotics!" Ughhhhh

She said his weight was 28 lbs and in the 50th percentile. According to her charts, his weight looks fine, not the best, but ok. They did not check his height. The nurse said his temperature was gone, so that was a relief!! After the Tylenol, the cat nap, and the 40 minute wait in the waiting room, he felt much cooler! THANK GOD!! Don't worry, Lil' Chris didn't wait in the waiting room, just Ayla and I. Chris was keeping him occupied out in the hallway so he wouldn't catch anymore germs. We always do that whether at the CF clinic or the Pediatricians :)

She said to give him plenty of fluids until we get the results back which will most likely be the beginning of next week unfortunately. I hope the clinic doesn't get mad that we stopped the Augmentin. Our CF dr. wanted him to keep taking it. I tried calling them when I got home, but it was too late and they were closed.

Hopefully he doesn't have anything serious. I'll let you know the results when I get them. Please say a prayer that he will start eating and drinking and get his energy back.

M

PS. We got his throat culture results back...he cultured Staphylococcus areus sensitive to Oxycillin (MSSA). He has grown this bacteria before and it requires no changes to his treatment.