400 Hours on the Vest/Important CF Stuff

Lil' Chris has reached 400 hours on his Vest! Crazy when you think that in the past 19 months, my son has sat still(or somewhat still;) for 400 hours while a vibrating vest shakes the mucus out of his lungs. Poor kid is only 2 1/2!!!! Looking at the pics, it's hard to believe that Lil' Chris was Ayla's age now when he first got his Vest!! I should dig up some of those pics on of these days:) This video was taken on Tues 12/15 when he reached 400 hours. At the end are a couple of pics and a video of him playing a balloon guitar he got from an elf at the mall...he LOVES guitars!!

Make photo slide shows at www.OneTrueMedia.com

Lil' Chris has a CF clinic appt on the 30th, so we are trying to get him to eat as much as possible to get his weight up, but it's hard when he refuses to eat anything;-( I can't wait until he grows out of this stage! I'll take any advice you may have for a very picky eater.

Both Lil' Chris and Ayla got their H1N1 booster shot last Wed. Ayla also got her Season flu booster shot too, then she had her regular check up...she weighs 21 lbs and 6 oz., and is 30 inches tall!!! My lil' piglet;-) She is in the 75th percentile for her weight and in the 90th percentile for her height!!! Our dr always laughs at me when my jaw drops every time I hear 90...I'm just not used to hearing 90, I don't think Lil' Chris was ever in the 90's for anything...I'll have to look at my records;-) I WISH I would hear 90 for Lil' Chris:) Someday, someday;)

Please say a prayer for Wesley's family. He passed away from Cystic Fibrosis yesterday and he was only 17. He got his wish...to know what it was like to breathe...he had new lungs for a year before he passed. Just breaks my heart. A double lung transplant isn't a cure. Click here to read Wesley's page.

Click here to read a very interesting article about how a CFer in the UK was saved by receiving "salvaged" lungs. Lungs that would have been unsuitable. This could be HUGE for CFers if this comes to the states!!!

Lastly, check out this new drug that could really help CFers as well...click here to read about aztreonam lysine for inhalation. The drug would offer a much-needed antibiotic alternative for cystic fibrosis patients who battle recurrent lung infections and often develop resistance to existing antibiotics. It is manufactured by Gilead and will fight against Pseudomonas Aeruginosa infections in the airways of Cystic Fibrosis patients. It has already been approved in both Europe & Australia under the name Cayston(R) and the US has been lagging behind in its approval. Our Cystic Fibrosis patients with Pseudomonas Aeruginosa are running out of antibiotic options to help fight infections in their lungs. Please email druginfo@fda.hhs.gov to help get this drug approved if you are a CFer or a caretaker of a CFer. Just send a short emial stating how much this could effect your life or child's life. Also copy the Commissioner of the FDA too margaret.hamburg@fda.hhs.gov and then bcc the CFF at publicpolicy@cff.org. Thanks so much for helping get this important drug approved as about 60% of people with Cystic Fibrosis have a chronic respiratory infection caused by the bacteria called Pseudomonas Aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas Aeruginosa is almost impossible to get rid of. Respiratory failure caused by this infection is often the ultimate cause of death in many people suffering from Cystic Fibrosis.

Until there is a CURE...
M
PS. I have to wear my hospital mask for the next few days, since I got a cold last night;-( Ughhhh!!! Please pray that the kids don't get sick too, esp Lil' Chris.