Annual CF Clinic Visit / CiCi's CF Fundraiser Results

Lil' Chris had his annual CF clinic visit on May 16th and he had a GREAT report! Lungs are CLEAR!! YEA!! For those who don't know, CFers go to a special CF clinic, usually at a Children's Hospital, every 3 months for a checkup. Then every year around their birthday, they have their annual visit, which is when they go over EVERYTHING!!! These visits usually are 2-4 hours long;( We have to prep for this visit by getting x-rays and blood work done beforehand. They said that his blood work looked GREAT!! The Dr. also said his x-rays looked GREAT too!! They aren't 100% clear in the pics below, but she said she didn't see any scarring yet! BIG YEA!!!!! Here are the pics from the past 5 years, one year was missed, not sure how that happened??....

5/21/08

6/16/10

3/16/11

4/4/12 First time standing up while taking x-ray

Click here to go to the post where he got his last x-rays taken standing up.

His weight went up from 41.2 to 43.8 and his height did too a little from 44.5 to 45 inches. His weight was in the 74th percentile(up from 66th last time, 3 months ago) and his height the 90th percentile(down a little from 92) and his BMI the 40th percentile(up from 20th percentile last time:) The doctors like CFers to be at the 50th percentile or higher for BMI, so this big jump is so nice to see!!!

The doctors made no changes to his meds, but they suggested we up his pressure to 5 instead of 4 on his vest for the first 20 minutes of his 30 minute treatment. We changed the setting on our Vest and he is handling it fine:)

Now that he is almost 5, every clinic visit(every 3 months) he will have to do a PFT(Pulmonary Function Test) which they will keep track of. Up until now, he has been practicing for it, but now they will keep it on record. Most kids can't even do it at age 4, they always are impressed with him:) He did a GREAT job and scored a 99 for his FEV and a 93 for his FEV1! Pretty good, but we want 100%!!! :) Next time...next time! You'll see in the video that he got one good one in the beginning, but he got tired after that. He's still learning. What he has to do is take a really deep breath and then blow out as hard and as long as he can. He's getting there:)

Make a video - it's fun, easy and free!
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He got a throat culture taken too. He impresses me every time when he doesn't cry or anything!!! I guess he is used to getting it done every 3 months now. It surprises me that he doesn't say things like, "I don't want to go to clinic, they will try to shove a thing down my throat!" He never complains, even though he knows it's coming! He just takes it like a man! :) That's my boy!!! I will let you know when I get the results from it. He didn't have a cough going into this visit, so I'm not expecting any bad bacterias, but you just never know with Cystic Fibrosis. That last antibiotic finally kicked out that wet cough he was having for what seemed like months! He coughs every now and then, but it's dry, so I'm not worried about it. I'm so glad that I pushed to get him on that antibiotic, b/c they fought me on it saying it was just allergies. Please pray the results come back clear or no new bad bacterias!!

So the doctor never ended up having him try the Pulmozyme for the first time in the doctors office like I was told. I guess that was just if we went with HTS instead of Pulmozyme, b/c some kids have reactions to HTS. My husband wanted to know if we could start it after vacation, and the dr saw no problem with that since it's only another month. I was kinda excited about getting started and going on vaca for the first time with it, but I guess it will be easier without it and that will make this our last vacation with no breathing treatments. Makes me sad when I think about it, but this Pulmozyme will be good for him. We want his lungs to be as healthy as they can be for when that CURE comes!!! Studies have shown fewer hospitalizations, lung infections, coughs, and antibiotics with the daily use of Pulmozyme, so I am ALL for that!!! I will post pics and videos when we do start it though:)

After our clinic visit, I had a CF fundraiser at CiCi's Pizza! BIG THANK YOU to my fellow Kohl's associates for helping out so that Kohl's would give a $500 grant!!

THANK YOU...

Jill P.

Kathleen S.

Jill S.

Laura T.

You girls are the BEST!!!

I was raffling off 2 tickets to an Indians game and we raised $170!!! Woot Woot!! Our winner of the raffle was our good supportive friends from church, Stephanie and Clay!!!! THANK YOU GUYS SO MUCH FOR YOUR AWESOME DONATION AND FOR COMING OUT TO SUPPORT US!!! They have also signed up to walk with us on June 9th at our Great Strides walk!! Stephanie has been posting her Great Strides page on Facebook and everything to help raise money!! We can't thank you enough Steph!! You'll be surprised as to how many friends and family will donate when you tell them about Lil' Chris!! Small amounts from each one adds up to a lot!!

So our total for the night including the raffle, the Kohl's grant, and the percentage from all the customers receipts was around $730!!! WOO HOO!!!! THAT'S AWESOME!! Special thanks to our neighbors Tiffany and Ryan and their kids for coming, and also Lil' Chris' teacher Ms. Carrie and her husband Justin for coming!! Thank you all for coming to support Lil' Chris and for your generous donations for A Cure 4 Lil' Chris and ALL who suffer from Cystic Fibrosis!! 

BIG thank you to everyone who donated that night at CiCi's!! Cystic Fibrosis is not funded by the government, so these fundraisers that us CF parents do are soooo important in finding that CURE!!!

My next CF Fundraiser will be at the Wooster CiCi's Pizza again on Tues May 29th from 5p-8p!! Raffle will be 2 tickets to an Indians game of your choice!!!

ALL are invited and please help me spread the word, either my word of mouth or by Facebook!!

Thanks again for everything!! Keep the prayers coming!!

M

PS. Garage Sale/CF Bake Sale Results coming soon:)

"Change for CF" Results and Party

Today Lil' Chris' preschool had a pizza party for all the money they raised for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis! It was an honor to join them in their pizza party and watch his friends celebrate in raising $173.57 to help find a CURE for CF!!! I loved watching Lil' Chris give his goody bags to his friends too as a thank you:) Ayla had fun at the party, she just joined right in:) LOL

Being protective of his lil' sis who joined their line:)

Being silly picking up Ayla

Pizza Party Time!!

He's the one who needs the calories the most, and he ate the least amount of pizza out of all the kids! LOL

He did eat his pretzels though :)

WOW!! LOOK AT ALL THAT CHANGE FOR CF!!! The kids did a GREAT JOB raising so much money for CF!!

Group pic with all the change that they raised!!

Goody bag for the kids as a THANK YOU!!

Lil' Chris passing out the goody bags to his friends:)

Ms. Carrie made this and sent it to all the kids to start the fundraising:) She did a GREAT JOB!! I love the pic of Lil' Chris! It's neat to see how much he has grown since the beginning of the school year:)

She also sent this home with the kids to get them to come to our walk on June 9th at 9am behind Ida Sue School!! One parent told me today that she signed up to be a team leader in honor of her friend in PA who has CF! What a GREAT way to support her friend and Lil' Chris!!

 

WE LOVE YOU MS. CARRIE!!!

 BIG THANK YOU to Ms. Carrie for setting up the "Change for CF" fundraiser and for inviting them to our walk, and BIG THANK YOU to ALL Lil' Chris' Preschool friends for bringing in change for CF!! We appreciate it soooo much!!! THANK YOU!!!!
M
PS. Lil' Chris has been doing great, no cough!! YEA!!! CF Clinic visit update coming soon!

BEST Support Team EVER!!! THANK YOU ALL!!

I've got some HUGE THANK YOU'S for some VERY special friends & family for all their support! This year has been very hard for me fundraising wise. I normally have 5 or so events/fundraisers done by May, but I only have 1 done. I just can't seem to get motivated this year for some reason! 

I don't know why, maybe it's just starting to hit me harder that my son's health is not going to get any better as he gets older...it's only gonna get worse. In just this past year alone, he has started an inhaler, the acapella, newer/stronger antibiotics, and will be starting his first DAILY nebulizer called Pulmozyme in less than 2 weeks. 

It's hard and takes a lot out of me to do a fundraiser and talk about "my son with a fatal disease called Cystic Fibrosis" for 3 hours straight, it's hard to sit down at the computer for hours trying to come up with the right words to practically "beg" your friends and family to donate so your son can have a longer more normal life, it's hard trying to raise awareness about a disease you despise more than anything in the world! 

CF is not something I want to think about on a daily basis. Sometimes I just want to pretend he doesn't have it and just live a normal life and spend every waking moment with him while I have him, but NO...I CAN'T. Keeping quiet about CF is NOT going to help my son live longer, it's NOT going to help him breathe easier, it's NOT going to help him live a more "normal" life. 

Going outside of my comfort zone by speaking up, writing emails, practically begging people for money, putting together a Great Strides Walk and raising money IS!! The following friends and family have inspired me and encouraged me to do more and NOT give up!! They know how important it is to raise the MUCH needed money for a CURE! Lil' Chris NEEDS me to do all these things I hate...his life depends on it.

So without further ado, my HUGE THANK YOU'S go to...

1. to my sister, D, and her family for raising $600 and walking for "A Cure 4 Lil' Chris" today at the Great Strides Walk in NC!! YOU GUYS ARE THE BEST!!! Thank You to the Jarvis Family for walking too:)

2. to my sis-in-law and family for donating and walking in NJ for "A Cure 4 Lil' Chris" and for braving the freezing cold weather:) THANK YOU ALL SO MUCH!!!

3. to our friend Kevin for getting his work, Preferred Wireless, to be our "Kick-off Sponsor" of $300 AND they are donating tons more for the walk, like lil' baggies to hand out and such. 

4. to our friend Deb for getting our "K-Marker Sponsor" of $250 who's company wants to remain anonymous...I think that's pretty cool...a company donating so much and not wanting any publicity for it!! :)

4. to Lil' Chris' teacher, Ms. Carrie, and all his classmates for doing "Change for CF" til the end of the school year!! They are bringing in change every day and I even saw some dollars in there too!! I can't believe their jar is almost full!!! Way to go kiddos!!! This will definitely "Change" CF forever!! ;)

5. to my friend Jeanette for getting her work, Wayne Savings Bank, to be our "Single Rose Sponsor" of $125!!

6. to our neighbors and friends who have come to us asking how they can help and for brochures to try to raise some money for CF...Sean & Michelle, John & Andrea, Melissa B., Carrie G., and Stephanie W at our church for helping get a team going there!! You guys are all the BEST!!! Your effort and interest means soooo much!!

7. to Stacie A at work who offered her support in any way and would love to go to my fundraisers and our walk, but can't b/c she has the sister disease to CF called Bronchiectasis. She has all the lung problems, but not the digestive problems like CFers.

8. to our neighbors who will be participating in our annual CF Bake Sale next Sat May 12th 8a-3p at our Community Garage Sale!! THANK YOU EVERYONE IN ADVANCE!! 

BEST part about all these amazing people, is that they did it all before I could even ask!! Isn't that AWESOME!! THANK YOU GUYS SOOOOO MUCH!!!

Lastly, I want to say a BIG THANK YOU to all those who have donated these past almost 5 years!! It saddens me to think about what Lil' Chris and all his CF buddies health would be like if myself and other CF parents didn't bug all our friends and family for donations. It's because of you guys that Lil' Chris is well and able to go to Kindergarten this year! 50 years ago, CF children didn't even live long enough to attend Kindergarten, so Lil' Chris going to Kindergarten this year is a BIG deal and YOU are all a part of that!!! Thank You All!!!

 

I can't thank you all enough for your dedication, love, and support!! It means the WORLD to us!!! 

THANK YOU, 

THANK YOU, 

THANK YOU!!!!!!

M

PS. If you haven't donated and would like to, click the Great Strides link under my header picture at the top of my blog to the right. If you would like a sample letter to send out to YOUR friends and family to help raise awareness and money, email me or leave a comment and I will send it to you. Thanks so much!

Cystic Fibrosis Movie Tonight at 9p on OWN Channel

Making its U.S. premiere tonight, the powerful documentary "65 Red Roses". Showing tonight at 9pm EST on the OWN: Oprah Winfrey Network. If you want to learn what it's like having Cystic Fibrosis when your in your 20's, you gotta watch this movie tonight!! I remember following her blog and I couldn't wait til it premiered in the US!! Now it's here!!

Click here for a sneak peak of this awesome documentary about Cystic Fibrosis and the importance of organ donation!

 She first got her fame by her blog about CF, then I remember watching her being interviewed on talk shows, and then she made this movie to raise awareness of CF!! She was a busy girl, but I admired her for all that she did for CF!! 

 I don't know if you remember when I posted her "Farewell" video, but it was heart wrenching. Click here for that post.

It's gonna be super sad for me to watch this movie knowing that she didn't make it after waiting for a SECOND double lung transplant, AND knowing that this MAY be my son in 20 years. I'm really hoping and praying that with the advancements in medicine recently, that this won't happen to Lil' Chris or his CF buddies. It's also the reason I raise money for a CURE!! Thank you all who have donated over the past 5 years!! EVERY penny means SOOOOOO much!!! After you watch this movie, you'll see why.

If your not already an organ donor...WHAT ARE YOU WAITING FOR??? You could literally save 7 people from dying and help tons more live easier!! Click here to register to become an organ donor today! If you don't do it now, next time you renew your license and they ask if you want to be an organ donor....PLEASE SAY YES!!! You could help save my son's or a fellow CFers life someday!! Spread the word!!

Thanks for the continued prayers and for watching this movie. Don't worry if you miss the 9p showing, there is an encore showing right afterwards and then it will show again on Saturday. Let me know what you think!

M

PS. Guess who learned how to ride his bike without training wheels on today?!?!? That's my boy! Riding his bike will be so good for his lungs! :)

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