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

Azithromycin / CF Commercial for 2012

Lil' Chris has still been coughing, but not as much. When he does cough though, it is pretty wet and nasty sounding. He has been up in the middle of the night coughing some too. We've(or at least when I am home;) been doing Vest 3 times a day(30min each time), and Albuterol before Vest, and Acapella after Vest, and some manual CPT. All this didn't seem to be helping.

So I played phone tag with the CF clinic for a couple of days, then finally got to talk to Nurse P and she thought he didn't need an antibiotic. She thought it was just allergies b/c they have been getting lots of calls about allergies b/c of all the pollen and crazy weather lately. Once she realized I was not convinced, she gave the dr. a call and long story short....we went back and forth a couple more times and he is now on an antibiotic he has never taken before called Azithromycin. He is to take 5ml the first day(yesterday) and then 2.5ml for the next 4 days. Weird that it's only 5 days, but we'll give it a whirl I guess. Nurse P didn't say much about it, so I may have to do some research on my own. I'm praying it makes his cough go away for good!!! Thank you everyone for your prayers and please keep them coming!


Above is the CF commercial my hubby and I made for our CF walk. He used the voice from an old CF commercial. We tried to get the pictures that were on that old commercial too, but couldn't figure it out, so we used pics of Lil' Chris, Jack, and Kendall. They all have Cystic Fibrosis and live near us. Us parents are all friends on facebook which makes it so nice and quick to get advice from each other:) LOVE our CF Community!!! :)

It will be played in any open spot from April to June 9th (the day of our walk) in Wooster on Clear Picture, Inc! We also made one for the Canton walk with all the same pics and words, just changed the walk site at the end. This one will play in Massillon on Massillon Cable TV, Inc. CLEAR PICTURE and Massillon Cable TV ROCKS!!! They are so AWESOME to sponsor us by playing our commercial every year for free!!!

You all have my bro-in-law to thank for this blog! He is the one who created this domain and renews it each March! Thanks Steve!! You're the BEST!!! I can't believe I've been blogging for FOUR YEARS!!! Wow, time sure flies by!! :) I can't believe there have been almost 35,000 hits too!!! UNBELIEVABLE!!!

THANK YOU ALL SO MUCH FOR SUPPORTING LIL' CHRIS IS HIS JOURNEY AND FOR ALL YOUR PRAYERS!!! :)
(((((((HUGS))))))) to you ALL!!! :)
M
PS. Let me know what you think of the commercial:)

CF Update / Inspiring Video / HAPPY BIRTHDAY to my HUBBY!!

Grab a tissue and watch this amazing, inspiring video...



To my CF buddies....Never give up!!!! I WILL NEVER GIVE UP ON MY SON AND A CURE FOR CYSTIC FIBROSIS!!!!

Now for an update: Lil' Chris' stuffy nose is in deed a cold I believe. It's hard to ever tell with him, b/c his nose doesn't just run and run and run like Ayla's. Instead it just gets clogged in his nose and ends up dripping down his throat I think. I guess b/c of the CF, it is thicker and stickier...IDK. The way I knew it was a cold, was b/c Ayla caught it 2 days ago and her nose has been running and running. Today it is a little better, but she is just very cranky b/c she doesn't feel good. My poor babies;( So far noone else has caught it. Hopefully we don't so that we can be around Nathan in a couple of weeks. On our CF clinic visit this Wed, I'm going to ask if it is even okay for Lil' Chris to be around Nathan. I don't want Lil' Chris to hurt Nathan in any way or vice versa.

Unfortunately, I think I hear a cough coming on for Lil' Chris;( This usually happens after his colds, probably b/c of the dripping down the back of his throat. Fortunately we have clinic in a few days. He'll probably be put on ANOTHER antibiotic if it doesn't go away between now and then.

Lil' Chris asked me today where Oma's car was, so I said that she went to the airport b/c Opa is flying in for the weekend for Daddy's birthday. He said, "Ohhhhhhh yeah! She's gonna CATCH him!" LOL!! This kid cracks me up on a daily basis with some of the things he says;-) LOL!

HAPPY BIRTHDAY to my WONDERFUL HUSBAND!!!! I LOVE YOU HONEY!! Can't wait til you get home from your new job so we can celebrate!!! This kids bought you a present:) Wanna know what it is??? I'll give you a hint.....it's freezing!!! ;-)

Nathan is Coming Home!! / Update on Everyone

Nathan is doing much better and is eating better now aaaaand......He even gets to go home today!!!! Isn't that a miracle?!?! They said his levels look good!

Even though he started his chemo the other day and is getting 2 steroids daily, he still had a big smile on his face when we skyped him the other night. Check out the montage below to see them putting smiles on each other's faces. Lil' Chris had to give Nathan a tour of our living room;-) LOL

Make an on-line slide show at www.OneTrueMedia.com

Nathan had to get a PICC line the other day, you know.... I never thought of one of the other kids in the family having to go through hospital stays, PICC lines, Ports, etc. I knew it was a possibility for Lil' Chris and I am prepared for that thanks to all my great adult CF friends and their videos and explanations, but to have my lil' nephew go thru this is just a shock to us all. For those who don't know what a PICC line looks like, here is a video that my buddy Josh did... (if the link below doesn't work, then click here)....

Nathan's PICC line will be coming out since he is coming home now. He will have to go to the clinic once a week and get pricked for his chemo each time;( I'm so glad I was able to convince my sister-in-law to sign up for CaringBridge to keep us all updated better;) Click here to sign up to get her updates.

Lil' Chris' cough is still there, but it is getting better. He doesn't cough all the time, just once in a while, but it is still a wet cough. We are almost out of his Augmentin, so I'm starting to get a little bit worried that his cough may not be gone by the time he finishes his 14 days. I think we should have done the 21 days like our old CF dr. used to have him do. I guess now I'll know for next time.

As for my ankle, the swelling has gone down quite a bit, but is still swollen on the ankle bone, which is where it hurts the most esp if I turn it the wrong way or step on it wrong. The bruising is looking better too, but is still multiple colors, just lighter now;-) LOL



So on top of limping around and wearing 2 different shoes b/c my ankle is so bruised, I also have a black eye now!! I can only imagine what people must be thinking of me now!! LOL Lil' Chris was sitting next to me on the couch doing his Vest, (and when I say sitting, I mean practically on top of me;)he went to shift positions and somehow the back of his head smacked me right under my eye! Let's just say I saw sparks!!!! It felt like someone had just punched me! Now, this has happened numerous times before, (b/c he is not too careful about flailing his head around your face, esp if he is getting tickled or something;) but this time it REALLY hurt and 2 days later people at work started saying..."Do you have a black eye???" So here it is, this is a pic of me shaking my head about the whole situation....
I'm so glad to have the weekend off. Maybe my ankle and eye will heal all up before I go to work on Monday;) LOL
M
PS. I haven't forgotten about Lil' Chris birthday pics;-) They are coming soon! Please continue to pray for Rachel's family.

CF Commercial / Cross-contamination / Some Awesome People:)

Here is our commercial for our Great Strides Walk for a Cure for Cystic Fibrosis for this Saturday, May 1st. My hubby and I put it together. Big THANKS to Logan and Daniel for their pics of them doing nebs and Vest treatments!! I wanted a pic of nebs, b/c Lil' Chris doesn't do any, but it is a HUGE part of the everyday life of a CFer and I wanted to display that. So THANK YOU LIL' FELLOW CFers!!!

Make video montages at www.OneTrueMedia.com

Daniel will be at the walk, along with Jack who is another lil' local CFer. Lil' Chris won't be there though:( I just can't bring myself to take him. There is such a thing as Cross-contamination. CFers carry different bacterias in their lungs and they can pass those bacterias onto other CFers. It doesn't affect non-CFers, but it could affect other CFers and others who may have any other type of lung diseases. I know we would all do our best to keep them apart, but Lil' Chris has been doing sooooo well and we just don't want to take any risks. Plus, I remember reading this comment on Mugga Bugga's blog from an adult CFer last year and since then, I REALLY don't want to take ANY risks...

Natalia Ritchie said...
My school of thought is CF people should always be separated from each other. Always. That's how my mom and dad did things when I was little, and I later on when I was a teenager and adult. I have seen too many c negative people become positive as a result of being in the same social circle. My docs always tell me to remember that cepacia can be in your body undetected for 2 years. Meaning just because someone is negative does not mean it is safe. This is what happened last year at my clinic, a group of kids were hanging out. All negative. There was this idea that this was safe. Within 9 months, 5 contracted cepacia, and now 3 of those 5 are no longer with us. I never understood why take those risks? The more doctors I talk about this with, the more tell me to do whatever it takes to keep myself cepacia free. I was even told by one of the leading infection control doctor in NY that we still don't know exactly how certain strains are contracted. She told me, if she was a CF patient, she would never be in the same vicinity as another CF patient, except when without choice such as clinic and hospital. I think it's a scary reality, but I think it's good practice. When people acuse me of being rude or not being apart of the CF community, I just don't care. This is my life. And certainly I don't want to infect and harm someone else with my strains or infection.I know it seems harsh, but I have seen such tragedy as a result of cepacia. xoxo

Now you probably see why I don't take Lil' Chris to our walks. I hate it though. I wish I could take him and not have to worry, but it is better to be safe than sorry. We'll see when he gets older and actually understands that we do all this for him and he knows to stay away from other CFers. The other day when we went to go get our pic taken for the local newspaper, Lil' Chris had to sit in the car for 1/2 an hour(the guy was late) b/c Daniel was out running around. Nothing against Daniel or anything, I am just very leery about having them so close. I almost didn't even want to roll down the windows!! I'm so bad. lol I just can't help it! I want to keep him as healthy as possible and Daniel too! Lil' Chris cultured something weird last time and Daniel doesn't need any new bacteria's in his lungs. I'm happy to report that Lil' Chris, Jack, and Daniel all had a GREAT year!! I just want to keep it that way:)

Our walk is THIS Saturday!! I can't believe how it snuck up on me!! If you haven't already sponsored me, please click here to see Lil' Chris' CF video and to make a quick on-line donation today:) Thank you to those who have already sponsored me:) It's greatly appreciated!! BIG THANK YOU to Amy K. at work who sent an email to her friends and family to get donations and has raised almost $100! And a BIG THANK YOU to Kevin and his mom Deb(our old babysitter;) for going around and getting donations and sponsors from their work and friends and family!! YOU GUYS ROCK!!! They have raised $315 so far and will probably have between $400 and $500 soon!! I'm sure you all agree with me when I say they TOTALLY ROCK!!! Thanks Kevin and Deb and all your donors:) You are all AWESOME!! The kids miss you Deb and so do we;-(

The coolest thing just happened!! I got an email from a complete stranger that saw our commercial on TV and found my blog by googling the walk!! Isn't that awesome?! Her name is Mallory and she will be coming to the walk this Saturday!! YEA!! She told me that she has a friend that lives in California that has Cystic Fibrosis, so she wanted to do anything to help out. Isn't that soooo nice?! I can't wait to meet her and her husband this Saturday:) She's going to try to get her friend to come to our walk next year:) That would be awesome! See you Saturday Mallory:)

M

PS. If you live in town, check the Daily Record today. There is a picture of us 3 local CF moms and an article about our walk:)

"Dare to Dream" song by Dr. Francis S. Collins

Check out this video where the director of the National Institutes of Health, Francis S. Collins, M.D., Ph.D. performs his song "Dare to Dream" at the CF Foundation's North American Cystic Fibrosis Conference (NACFC) in Minneapolis, MN on 10/15/2009.

More than 3,000 leading scientists and health care workers from around the world have gathered to talk about the latest treatment and research into the chronic lung disease.

A pioneer in Cystic Fibrosis research, Dr. Francis Collins, opened the conference. Collins was part of the team that 20 years ago, discovered the gene that causes CF.

Today, he is better known as the director of the National Institutes of Health - the biomedical research arm of the federal government.

President Obama called him "one of the top scientists in the world," when he nominated Collins to the post in June.

Dr. Collins talked with All Things Considered about cystic fibrosis and some of his other priorities in his new post at NIH.

Isn't is great to see or hear that these doctors "GET IT!"

M