ANOTHER COUGH?!? / Kalydeco Helping 20% of CF Population?!?

Sooooo I never should've posted yesterday about his cough being gone 100%, b/c guess what he started today?!? Yup! Another cough! Not sure if he got it from Ayla or not, but this just STINKS!! He's not coughing all the time, but when he does it sounds wet already;( UGHHHHHH!! 

May 16th can't come soon enough!! I'm tempted to call the CF clinic to see if he can start the Pulmozyme now since we have the machine and the medicine now, which btw took me over a MONTH to get!!! I know they wanted to do his first treatment at the clinic, but these coughs are dangerous for his sensitive lil' lungs. I know the Pulmozyme won't take away his cough, but I'm hoping it will help decrease his coughs so he won't get them so frequently. 

The more coughs he gets, the more antibiotics he gets, which means the sooner he will become resistant to those antibiotics, and then what??? I don't want to think about that! So if this Pulmozyme can help decrease those coughs, then he will need less antibiotics, and then when he really needs an antibiotic, he won't already be resistant to it!! Make sense??

We have to try to do all we can to keep his lungs stay as healthy as possible until the miracle drug is ready for him!! I just KNOW it's coming soon for him!! There are so many promising stories about the new drug Kalydeco!! My CF buddy, Ronnie, posted this yesterday about "Kalydeco-Can it Benefit Others?" (click that link) It's very interesting how he talks about Kalydeco, which we were all to believe originally that it was only for 4% of CFers, but now may be able to help 16-20% of the CF population!! That's FANTASTIC NEWS!! Although Lil' Chris still isn't part of that 20%, b/c his CF gene type is different(double delta F508), it still gives us GREAT HOPE that a CURE is coming soon!!! WOO HOO!!!! Thanks Ronnie for sharing!!

Donating now is so much more important than ever, b/c we are sooooo close to finding a CURE, but it takes millions of dollars to get these drugs rolling!! It's so easy to donate and don't forget...it's 100% tax deductible!! Click the following link to donate today and help find a CURE for Lil' Chris and all his CF buddies! Trust me, you'll feel good about yourself afterwards knowing you helped save so many young lives...

 http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks in advance,

M

PS. I'll send you a cute thank you card with Lil' Chris' pic on it after you donate!!! Just a lil' incentive;-) lol

Our Decision on Pulmozyme or HTS / CF Update

Hmmmm, I went to go blog today and it's all different!! They changed it on me! You should still see the same, but I think just the way to write on the blog is different now. Not sure if I like it, but I'll get used to it hopefully;-)


Anyway....Big news!!!!!

PULMOZYME IS IN THE HOUSE!!!!

 Shipped in this cooler/box on ice ice baby ;) lol

 The kids had lots of fun playing with the bubble wrap and dragging each other with the long one:) lol

These are REALLY loud when they step on them and pop them!!

So sad:'( I HATE that he's going to have to take this for the rest of his life, but if it helps him, it will all be well worth it!!! He will start this nebulized drug on May 16th which is his next CF clinic appt. Please pray he takes to it well and that it works for him, b/c if it doesn't then we'll have to try the Hypertonic Saline(HTS). Thru my research, I found both good and bad things about each Polmozyme and HTS. What it seemed to boil down to was that it just depends on the CFer. What might work great for one CFer might not work so well for another CFer. It was a Big decision to choose which one, but we are praying that we made the right decision and this Pulmozyme works miracles for him!

Below is the nubulizer machine. It's the MoblAire 150psi by Invacare, which I was told is the Best of the Best!! I don't have anything to compare it to since this is the first nebulizer Lil' Chris has had...so we'll take their word for it;-)

In other Big news.....Lil' Chris has reached over  

TWELVE HUNDRED HOURS

  on the Vest!!! And he mostly sits pretty good thru it, esp since we got the iPad2;) Thank You Kohl's!! :)
As for a CF Update on Lil' Chris...he is doing VERY well!! That last antibiotic finally kicked in and his cough went away!! PRAISE THE LORD!! Our 7 step treatment 3x a day plan worked!! YEA!! Thank you all soooo much for all your prayers! It's soooooo nice not hearing him have a wet cough anymore!! It's seems like it's been way too long since he has gone 100% without a wet cough! I am one happy momma...except Ayla has had a runny nose and a cough for the past week. I think it's just allergies, but I'm REALLY hoping and praying that Lil' Chris doesn't pick up her cough. I'm so glad that she has learned that it's important not to get Lil' Chris sick. She always makes sure she covers her mouth when she coughs, and she tells Lil' Chris when he wants to get close and play, "I don't want to get you siiiiiiiiick!" :)

Again, thanks for your continued prayers,
M

Annual Chest X-rays and Blood work-almost 5 yrs old

I talked to the CF clinic and we are extending his 5 days to 8 or 9 days of this Azithromycin to finish up the bottle since he still coughs every now and then. It's better, but not gone. They said after an oral antibiotic it should be completely gone, esp since we are going above and beyond with my 7 step treatment plan(check last post;)

Yesterday we took Lil' Chris to the CF clinic to get his annual chest x-ray and blood work done. He did such a GREAT JOB!! He was a little afraid of the needle...he was breathing heavy once he sat on my lap in the chair, but still did great!! After we got the x-rays, I asked if we could get a cd of all his x-rays of the past 4 years and they did it!!! I'll try to figure out how to put them on here if I can. They don't look much different from his first x-ray when he was one, but they aren't very clear either, so not sure what to think. I can't wait til our May 16th appt to ask the dr. I'm going to ask to see the x-ray there so she can go over it with us. They have never done that before, not sure why. I guess I'm gonna have to ask for everything;-) lol

Well, if I'm not on here before Easter, I hope you all have a very happy Easter!! :)
M

Cough Update / 7 Step Treatment 3 times a day to get rid of it hopefully

Well, only a couple days left of his antibiotic and he is STILL COUGHING!!!! AHHHHHHH!!!! So frustrating.

I heard that Azythomycin stays in the system for 10 days even though he is only taking it for 5 days, so I guess we'll wait and see???? I'll prob call the CF Clinic in a few days if his cough isn't gone by then.

The next few pics are of Lil' Chris doing his Albuterol puffer before his 2nd Vest time today and his Acapella after Vest to try to get rid of this nasty cough.
With chamber...
Without chamber...(he likes to do it this way better, and he is pretty good at it too!:)
Holding it in....
I just love his look in this pic;-) LOL
Blooooooooooooooooow!!!
This was him at the end of his treatments after doing...(I may add this pic to the CF commercial;)...

1. 1 Albuterol puff with chamber and taking 10 deep breaths, wait one minute
   
2. then one Albuterol puff without chamber and holding it in
3. then Vest for 30 minutes
4. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
5. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
6. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
7. Then I encourage him to cough it up and spit it out if he can. Today he actually got some up and spit out!! I was so proud of him! I told him he will get a treat every time he does it, hopefully this will encourage him to cough it out more often:)
   

He's been doing these 7 steps morning, noon, and night along with some manual CPT as well(when I'm with him;). Poor thing. I pray it does the trick!

Cystic Fibrosis STINKS, literally sometimes, but overall...it just plain STINKS!!! We need a CURE ASAP!!! It seems like Lil' Chris' CF buddies are having a hard time too lately. Jack & Alli(brother and sister), and Kendall have cultured at least one of the 2 bad bacterias called MRSA and Pseudomonas. Not good. Please keep them in your prayers, and as always keep Phennyman in your prayers too. It's so hard seeing these kids suffer at such young ages.

Thank you soooo much to those who have donated so far!! It means the world to all us CF families!!

Here is the CF commercial my hubby made for the Canton Walk that will play in Massillon. It's the same as the Wooster one, but the walk info is different. We are going to try to get the dates taken off the bottom corners before we send it in;-) lol

If you haven't donated yet and would like to, go to http://www.cff.org/Great_Strides/LilChrisChris6765 and click to donate today! It only takes a minute! If you would rather not pay by credit or debit, you can send me check made out to the Cystic Fibrosis Foundation. If you need my address, just email me, my email address is to the right of the blog.

Thanks everyone for your much needed prayers and keep them coming!!
M