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

Thursday, March 4, 2010

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!
PS. Guess what Ayla is doing now;)


Lovin Lane said...

I was meaning to tell you I just love your new pic on the top of your page... It is a great picture... Loved reading all your great new news... and when I was reading your blog yes Lanes drainage always gets stuck in his sinuses... he has had his share of sinus infections.... Now he stays on an antibiotic all the time, and that is the only thing that prevents the sinus infections, but it kinda makes me nervous for when it doesnt work anymore.... Anyways.. I also love your video.... I so need to make one, when ever I figure it out lol..

CFMama said...

I will remember to keep the suction bulb next time. I never used one because it terrified me but I guess it is really good to have when your kid won't blow his nose. =)

And thanks for the FYI on the sanitizer. We don't use those brands thank God. What irony though.

I also need to learn from you on the fund raising, you are always doing one and I am so bad in this dept.