2014 Great Strides Commercial for our 5th Annual Wooster Walk

Here it is...our 2014 Great Strides Commercial for our 5th Annual Wooster Walk for a CURE for Cystic Fibrosis!!!! It will play on MCTV in Wooster starting in April until the day of the walk on May 4th. So, be on the lookout;)

BIG THANK YOU TO MY WONDERFUL HUSBAND FOR PUTTING THIS ALL TOGETHER ALL BY HIMSELF THIS YEAR, HE EVEN DID THE VOICE!! THANK YOU, HONEY!!!:)

Featured in the commercial are CFers...Lil' Chris, Harrison, Aden, Aubrey, and Sophia.

Harrison will be new to our walk this year...he's such a cutie:) It looks like we may have another new team this year too...McKenna's Maniacs. I haven't met them yet, but I look forward to meeting them at the walk:)

Our goal for the walk this year is a total of $22,000 raised and so far between all the teams, we are at $4,615. Not bad, but we got a long ways to go. So if you know of any businesses that would like to sponsor our walk, please let me know! We have different levels of sponsorship and we will advertise their business at our walk.

Also, our goal is to have 200 walkers and right now we are at 55, so please make sure you sign up today! It's easy to register, just click the team you want to join and then click "join our team" and answer a few questions and make a password. Quick and easy!! Usually I register most of my team for them, but with the new website this year, I found out that I can't. They have to register themselves, but luckily it's not hard and the best part is...whenever I share my team link, someone could donate towards ANY of my walkers!! That's pretty cool!! We can try to share the love:) Remember, if you raise $100 or more, you will get a free CF shirt at the walk:) All you have to do is ask 10 people to donate $10 or 5 people to donate $20!! Simple:)

Here is the link to all the teams, so all you have to do is click on the team you want to donate to or "Join" to walk or help raise money!! http://fightcf.cff.org/site/TR?pg=entry&fr_id=2280

I'll update more about all the fun things we are going to have at the walk soon:)

BIG THANK YOU TO ALL WHO HAVE DONATED OR SIGNED UP TO WALK SO FAR!!! WE ALL GREATLY APPRECIATE THE SUPPORT!!!!
M
PS. I posted the new commercial at the top of the blog also, and it will stay there in case you ever want to watch it again when you check one of my posts;)

2014 Great Strides Commercial Coming Soon

Check back soon

for our new 2014 Great Strides Commercial for our walk for a CURE for Cystic Fibrosis

coming up on Sunday, May 4th at 11am at Ida Sue School Pavilion!!!!

 

Gonna be LOTS of FUN!!!!! Will update more soon!!

 

Please pray for our committee team as we try hard to make the walk a GREAT day:)

 

Thanks,

M

Thank You!!!!!

Postcards by Vistaprint

My wonderful hubby just ordered this years thank you cards for donations and help with the walk:) I usually don't share them on here, but it's so cute, how could I not;)

If you would like one of these cards, just make a donation on Lil' Chris' Great Strides page or sign up to walk with us for a CURE for Cystic Fibrosis!!! Click this link, it's fast and easy and 100% tax deductible...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280


Big THANK YOU to Kohl's, Barb N, Paul & Kim, Holly S, Stacy W, and Aunt Mar for your donations!!! We GREATLY APPRECIATE EVERY PENNY!!! The researchers are soooo close to a cure and you guys just helped us get closer...can't thank you enough!!! :)

BIG THANK YOU to Dave and Debbie C, Kevin and Jessie, and Deb W. for signing up to walk with us on Sunday May 4th for a CURE for CF!!! Can't wait!! It's going to be so much fun!!!

Our goal is $5,000 and we are currently at $2,110!! WOOHOO!!! This kids classes at Wooster Christian School are doing "Change for CF" to raise money!! YEA!!! Thanks for the support WCS!!!

Thanks Everyone,
M

Cough Update

Sorry it's been awhile, but I've been busy fundraising and organizing for our upcoming walk for CF on May 4th. This is our 5th annual walk!! I can't believe how time flies! Seems like yesterday I made the call to the CF Foundation to get a walk started here in our town since all the other walks are kinda far:)

I'll update you more on the walk later, but for now I'll fill you in on lil Chris...My last post was when he had that bad cough and we thought he was going to have to get an antibiotic for it...we'll, I'm happy to say that his cough went away on its own and I didn't even need to call the clinic!!! YEA!!!! I was so relieved!! He's has been doing great since!! Thank you all sooooo much for all your prayers!!! God definitely heard our prayers and answered them!!

Well, I gotta get back to fundraising... I'm in the process of writing a letter to the kids classes about joining us for our walk and raising money for A CURE 4 Lil' Chris;)

Keep checking back for some exciting news coming soon:)
M

CF Update-Cold and Cough:(

Last weekend, we all got a cold, and now we all have a cough:( Poor Lil' Chris coughed his head off all day yesterday. A wet/dry cough. We tried everything...Albuterol puffer, Mucinex, Pulmozyme, Vest, Acapella, manual CPT, Vicks Vapor rub on his chest and feet to help him sleep last night(thanks Nancy for the reminder, I totally forgot we had that:). I felt so bad, he just couldn't stop coughing. At one point I started counting in between coughs to see how high I could count...I only got to 17 seconds:(

Luckily, he finally fell asleep last night and was able to sleep through almost the whole night. Of course, he woke up coughing again though, not as often, but still a lot:( I know the CF clinic won't give him an antibiotic unless he's been coughing for a few days to a week to see if it will go away on it's own, b/c they don't want him to become immune to the antibiotics. So, if he's still coughing by Monday, I'm calling to get an antibiotic. Hopefully his cough will be gone or hopefully the clinic will be good and prescribe an antibiotic ;p

Normally when he gets a bad cough they tell us to up his Vest from 2 times a day to 3-4 times a day...kinda hard when he is in school from 9-3:30. I know some parents who take the Vest to school and do treatments there during lunch or something, but I don't know how he would respond to his class mates seeing him do his Vest. So we will just have to do Vest before and right after school and then right before bed. So that's 1 1/2 hours each day, poor kid. Luckily he has been in good spirits. He goes along playing and laughing like he's not even coughing! I don't know how he does it!! I was coughing a lot at work and it gave me a headache and I felt miserable:( Ayla was the first one with a bad cough and she was put on Azithromycin for 5 days.

Please pray that his cough goes away soon and doesn't do any permanent damage to his lungs. Just yesterday the FDA approved expanded use of Kalydeco for 8 more mutations!! None of them are his mutations, but...this means they are getting closer and closer:) WOOHOO!!! We just need to keep his lungs as healthy as possible until they get it approved for him!!! http://www.cff.org/aboutCFFoundation/NewsEvents/2-21-FDA-Approves-Expanded-Use-of-Kalydeco-for-CF.cfm

I also just got some GREAT news from a fellow CF mom which totally made my day!!! So, despite everything that's going on with Lil' Chris' lungs right now, I have so much HOPE for his future:)

Thanks everyone,
M

CF Clinic Visit and Results 1/8/14 6 1/2 years old

Lil' Chris' 3 month check-up at the CF Clinic last Wed went GREAT!!!

Here is the comparison from his last visit on 9/18/13(you can always find this list on the right hand side of this blog;)...

-9/18/13 51.8lbs, 49 inches, 44% BMI, 94/82 PFT

-1/8/14 52.5lbs, 49.5 inches, 36% BMI, 95/88 PFT

 

As you can see, he gained some weight, got taller, his BMI went down(b/c he got taller), but his PFT's went UP!!! I was worried his PFT's were going to be bad, since he just got over a cough, but he did a GREAT JOB blowing until his face turned red!! I think that was the best he ever blew!!!

 

They did a throat culture and I already got the results back that it is "NORMAL" again!!!! WOOHOO!!!! I couldn't be happier!!! It was a year ago this month that he had cultured Pseudomonas(really bad bacteria). Since then, he has cultured "normal" which is AMAZING!!!! Pseudomonas is usually VERY hard to get rid of, so PRAISE GOD it stayed away!!!

 

He also got his annual chest x-rays done. He still needs to get his blood work done, but we have until his annual cf appointment on 6/4. He was supposed to get blood work done last year, but once school started it was hard to find the time to go and get it done. He gets blood work done every year and chest x-rays every other year.

 

They did see some more scarring in his lungs, which isn't good, but they said that is normal for a CFer:( I was really hoping to keep his lungs from scarring before a CURE came, but we do everything we are supposed to do and he only had like 1 bad cough in the last year, so idk.....

 

I asked the doctor about the chest pains he gets sometimes, and she said to try Tums. We usually just do his Albuterol puffer, but lately we have tried the Tums too. Not sure if either helps or not, b/c it usually only lasts about 5-10 min. The day after clinic, he had those chest pains about 4 or 5 times. We actually picked him up from school at noon. Not sure what is causing it. We thought maybe it's heartburn or something. His doctor doesn't think it is CF related. She thinks it might be Precordial Catch Syndrome(Texidor's Twinge). http://en.wikipedia.org/wiki/Precordial_catch_syndrome or http://www.precordialcatchsyndrome.org/causes-symptoms-and-treatments-for-precordial-pain/

 

Precordial Catch Syndrome (PCS), also known as Texidor's Twinge, is a common cause of chest pain in children and adolescents. It also occurs, though less frequently, in adults. PCS manifests itself as a very intense, sharp pain, typically at the left side of the chest, generally in the cartilage between the bones of the sternum and rib cage, which is worse when taking breaths. Patients often think that they are having a heart attack which causes them to panic. This pain typically lasts from 2 or 3 seconds to a few minutes, though, in some cases, they can persist for up to 30 minutes. The frequency of episodes varies from patient to patient; sometimes occurring daily with multiple episodes each day, or on a less frequent basis with weeks, months, or even years between episodes. On rare occasions, breathing in or out suddenly will cause a small popping or cracking sensation in the chest, which results in the pain going away. In most cases the pain is resolved quickly and completely, and medication is not needed for the pain to subside. There is no known treatment or cure for PCS.

His CF doctor said that most likely the Albuterol and Tums won't help it. It will just go away on it's own after a few minutes. She said there is no real concern and suggested that we get him checked by his Pediatrician to make sure nothing else is going on. So I will be making an apt soon if it continues. I hate to go to his Pediatricians during cold and flu season, but if this continues, we will go. Please pray that these pains never come back and that it's not something worse!!!

 

Thanks for all your continued prayers,

M

PS. I got to meet a fellow CF mom, Lesley, that I'm friends with on Facebook at clinic, and her son Cohen with CF. It's always nice chatting with someone else who "gets it" ;) Glad Cohen had a good visit too:)

Bactrim Update / CVS

The Bactrim he started on Sun has def helped and his cough is pretty much all gone. YEA!!!

Only problem is...it was supposed to be for 14 days, but it ran out in only 6 days. So I called our CVS pharmacy and she said that the dr may have made a mistake in the math, so she called the dr and they said that he should be on it for 14 days. So now I have to go pick up another bottle. I'm so glad that our local CVS pharmacy was able to figure this out quickly on the weekend so that there was no lapse in giving him his Bactrim. Once I told the pharmacist that he has CF, she took the situation very seriously and figured it was a mistake in math on the script. I LOVE OUR CVS!!!

CVS is sooooo very easy to order refills too!! I just do it through an app on my phone:) It literally takes me less than a minute!! LOVE IT!! The app also lets me see when the last time I got a refill, what date I can refill it again, and when it expires!! This is GREAT, b/c then I can let the dr know if I see it's going to expire soon:) It's not good to have lapse in meds with CF. I try my hardest to stay on top of ordering all his meds and this CVS app makes it VERY simple! I wish we could get all his meds through CVS!! If you don't use CVS, I highly recommend it if you can!!

I'd say another fav part of CVS is that they have a drive-thru. I always hated going into Drug Mart to get his meds, b/c you never know what germs you might pick up. I still sanitize after touching the pen and clipboard thru drive-thru at CVS...you can never be too safe;)

Save the date for our next Great Strides Walk for CF on Sunday May 4th 2014 at 11am in Wooster!!!

Thanks for all the continued prayers! Keep praying for a normal throat culture, weight gain, and high PFT's this Wed at his 3 month CF check-up at the clinic!!!
M
PS. HAPPY BIRTHDAY TO SAMANTHA, AUBREY'S MOM!!!! :)

Cough Update

Lil' Chris started 14 days of 3tsp 2x a day of Bactrim on Sunday 12/29/13 for his wet cough. This is the first antibiotic since last January when he was on Tobi and Cipro for Pseudomonas!!!! Praise the Lord he has had an AMAZING year despite having cultured Pseudomonas last Nov and Jan!!!! This is only his 4th cough in 2013. Not bad!! The other coughs weren't bad and went away without antibiotics, but this one kept getting worse, so I felt he needed a little help of an antibiotic. Luckily the medicine is working great and his cough has gotten much better!!

We are going to use his next cf clinic apt as a follow apt for this cough and antibiotic. It's on Jan 8th, so please pray for normal throat culture, good weight gain, and good PFT's!!!!

I hope everyone has a HAPPY, HEALTHY NEW YEAR!!!!! I'm praying 2014 is the year for a CURE for CF!!!! They are sooooo close!!! I'll be starting my fundraising soon to get to that CURE sooner!!! :)

Thanks,
M
PS. I LOVE my new laptop, honey!!! Thanks so much!!! :)