One Cough in 9 Months!!/BEST Culture Result!!

 Some pics of Lil' Chris doing his Pulmozyme and Vest before bed.

I was just looking back on my blog here, and I realized that Lil' Chris has only had ONE cough since he started the Pulmozyme daily!!! Pulmozyme helps thin the mucus. He used to get about 5 coughs a year, and now it has been 9 months and he has only had ONE cough!!! And that's including culturing Pseudomonas 2 times!

 AMAZING!!! THANK YOU JESUS!!!!

He used to always get coughs after a cold, but he hasn't the last few times, including his last cold on 3/7/13!! WooHoo!!

Oh, btw, his last culture came back.....

drum roll please..... 

NORMAL!!!!

WOOHOO!!! 

Thank you all for your prayers!!! Keep them coming, because they are working:)

 M

Walk/Commercial Update / Big Thank You's :)

The new commercial for our CF walk is in the mail to Clear Picture!!!! WOOHOO!!!

BIG THANK YOU to MCTV for helping spread the word about Cystic Fibrosis and our Great Strides Walk!!!

Pretty soon it will be playing all over Wooster and possibly Massillon!! They usually play it one month or so before our walk, and our walk is only a month and a half away!! I'm getting very excited!!! I can't wait!! This year is going to be GREAT!!!

We are going to have Domino's Pizza, McDonald's, Panera Bread bagels, fruit, water, soda, Pat Catan's craft table, different emergency vehicles for the kids to explore, and of course Dr. Dave and his wonderful balloon animals:) There will be lots of prizes given out too just for coming and joining our walk and donating:)

If you would like to sign up under our team "A Cure 4 Lil' Chris," just click here or click the Great Strides logo on the right side of this blog and click "Join My Team"!! It's that easy!! You can even make your own team and be a team leader if you want!!

If you don't live around here, but would like to still participate, you can go to cff.org, click the Great Strides link, and then search for a walk in your area!! We have many walks all over and you can even create a team for Lil' Chris and walk for him!! My sister-in-law does this in NJ, and my sister D does this in NC, but this year she is driving out to join our walk!! YEA!!! :)

Also, if you can't walk, but would like to donate, click here. I haven't ordered my thank you cards with Lil' Chris' pic on it yet, but I hope to today;) All who donate will receive one:) I know some who line them up on their fridge year after year and compare how big he has gotten and how many new treatments were added in just one year. Plus...he's a pretty cute kid...who wouldn't want his pic on their fridge;p Hee Hee!!! You can always mail me a check if you don't like using the computer:) Just make it out to Cystic Fibrosis Foundation. Email me for address.

And.... if you can't walk or don't have the money to donate right now, you could always ask your company if they would sponsor our walk(or you as a walker) or donate something for the prize giveaways at the walk! Also, you could send out a quick email to your whole address book and tell them of Lil' Chris' story and ask for donations. You can share my blog or my Great Strides link with them:) I know a few people who have raised a couple hundred dollars for Lil' Chris this way:)

BIG THANK YOU to Sprint Preferred Wireless in Wooster for being our Kick Off Sponsor!!  Thanks so much Kevin W. for contacting them and walking again this year!!:)

Another BIG THANK YOU to Wayne Saving Community Bank in Wooster for sponsoring our walk by being our Single Rose Sponsor!! Thanks so much Jeanette H. for setting that up and for walking this year!!:)

Big Thank You to all who bought something from my Thirty-One and Arbonne CF Fundraisers!! We GREATLY APPRECIATE IT!! I don't have the totals in yet, but when I do, I'll let you know how we did:) BIG THANK YOU to Carrie G. and Stephanie W. for donating their commission from the parties:) You girls ROCK!! If you would like to set a party with them, just let me know and I will get you their contact info:)

If you have any questions, please let me know!!
Thanks everyone,
M  

2013 CF Commercial / Fundraisers close this Thurs

Above is our 2013 commercial for our CF Great Strides Walk for a CURE for Cystic Fibrosis!!! I hope to double the amount of people and double the amount of money raised this year!!! If you haven't signed up to walk yet, click here to sign up under my team "A Cure 4 Lil' Chris," or you can make your own team and be a team leader! Let me know if you have any questions!


Here was last years commercial we made...


This year is our 4th annual walk for CF here in Wooster. I can't believe it's been that long already!! I still can't believe that Lil' Chris will be 6 years old one month after the walk!!! 50+ years ago, kids with CF never made it age 5 or 6...and here we are with a very energetic, happy, healthy little CF boy:) I can't thank those who donate and walk with us enough to show how much it really does mean to our family and all families that suffer from CF. THANK YOU, THANK YOU, THANK YOU!!!! WE ARE SOOOOO CLOSE TO A CURE!!! WE WILL GET THERE WITH YOUR HELP!!

If you can't walk with us, but would like to donate, click here to donate in honor of Lil' Chris:) Thank you sooooo much!!

So everyone knows, my 2 CF fundraisers from last week, Thirty-One party and Arbonne party, will remain open until this Thursday 3/14!! A percentage of every purchase will go towards a CURE for Cystic Fibrosis!! Here are the links...

To purchase some awesome Thirty-One bags, click this link...https://www.mythirtyone.com/shop/catalog.aspx?eventId=E2826354&from=DIRECTLINK

To purchase some awesome all natural hair, skin, make-up, and nutrition products, click this link and respond to the invite, put your name and email in, then click "shop online"...https://www.arbonne.com/cm/a/external/invitation/showInvitation?presentationId=720035&attend=N&language=en&country=US&guestId=4358453#

We are hoping to raise at least $250 from each party + the $500 from Kohl's for each party equals to $1500!! We CAN do it!!

Thanks,
M

CF Fundraiser Tonight and Thurs!!

My Thirty-One CF fundraiser is TONIGHT!! Click below if you would like to order and have 25% go towards Cystic Fibrosis!! This months special is for EVERY $31 spent, you can get any tote for 50% off:)

https://www.mythirtyone.com/shop/catalog.aspx?eventId=E2826354&from=DIRECTLINK

This Thursday is my Arbonne CF Fundraiser, 6pm at my house! Let me know if you can make it!!

Thank you soooo much to those who have ordered already!! 

We GREATLY APPRECIATE EVERY ORDER!!!!

M

PS. Guess who went skiing???  Pics coming soon;)

Pseudo 3rd time in a row?????

 Eeeeek, is it Pseudo AGAIN????

I got a call from the CF nurse yesterday around 4:15pm, but of course I was at work and didn't hear her message until I had my dinner break. I hate it when that happens, b/c then I have to wait til the next day to call them back since it's after hours. So naturally, my husband and I think the worst...that he cultured Pseudomonas yet again:'( That seems to be the only time the CF nurses ever call us. 

Needless to say...I didn't get much sleep, b/c if he did culture Pseudo this 3rd time in a row, then he would have to do TOBI every other month. TOBI is really hard on all of us. Lil' Chris has to sit there for ONE WHOLE HOUR in the morning before school AND ONE WHOLE HOUR before bed, whereas we are used to just doing his Vest for 30 minutes in the AM and PM and we do the Pulmozyme the same time as the Vest in the evening, but adding TOBI was putting another 20-30 minutes onto his daily routine. We made it through the last 2 times he had to do it for 28 days each, but we were REALLY looking forward to not having to do it for awhile.

So, I got a call from the CF nurse just as I was about to take Lil' Chris to school this morning and I braced myself for the worst news possible......but.....she said that he DIDN'T culture Pseudomonas!!! WOOHOO!! Praise the Lord!! I was so excited!! I of course let Lil' Chris know the good news right away!! It didn't even phase him...all he kept thinking about was how he was taking his 50 words/flash cards that I made to show his teacher that he can read them:) He's such a laid back kid when it come to his CF! I've seen CF kids get so emotionally involved with their CF that it's so hard on the whole family, yet Lil' Chris just takes everything that's thrown at him like it's nothing. He just does what's best for himself! I love this kid:)

What this means, is that the Pseudo may have been successfully eradicated! There will be no changes in the rest of his meds and treatments. He will get another throat culture at his next 3 month check-up on 5/8/13. Then the worry game will begin again. Please keep Lil' Chris in your prayers that the Pseudo never comes back again! A CURE is right around the corner, he just needs to stay as healthy as possible until all us CF Mommy's and Daddy's can raise enough money to fund the much needed research for that CURE, since it is not funded by the government. Please help support CF and make a donation today or sign up to walk with us on 5/5/13!! Click here or you can always click the Great Strides link under the picture at the top and to the right of this blog:) Thanks so much!!

I had waited to update my Great Strides video for 2013, b/c I didn't know whether I was going to have to add that he does TOBI every other month or not, but now that I know his TOBI has been cancelled for next month until he gets another culture, I can post my finished product:) I must say, it's always hard updating this video each year, but I am super happy not to add TOBI in for every other month!! Praying next year there won't be any adds!! Here it is, my Great Strides Video for 2013, sorry it's mostly the same, but I like the back story, and I did add some new pics at the end:)....

Make a video - it's fun, easy and free!
www.onetruemedia.com

Don't forget...I have 2 CF fundraisers coming up next week. Thirty One Party on Tues March 5th at 6pm and Arbonne Party on Thurs March 7th at 6p, both at my house:) Let me know if you can make it and for directions!! You can still order even if you can't make it to the fundraiser...a percentage of each sale goes towards a CURE for Cystic Fibrosis!!! 
Thanks, 
M

2/20/13 CF Clinic Visit / Fundraisers

 YIPPEE!! Doing TOBI for the last time ever, hopefully:)

 3 month check-up, 5 1/2 yrs old

 PFT(Pulmonary Function Test)

Lil' Chris had a GREAT 3 month check-up at the CF Clinic yesterday!! His weight was 46 lbs and 9 oz and his height was 47 inches. At his last visit on 10/24/12, his weight was 46 lbs and height was 46 inches, so he grew a whole inch!! No wonder I had to buy more pants for him for school!! LOL His BMI was 30 and now it is around the 35th percentile. The dr said he is doing well still b/c he grew so much. His PFT last time was 97/92 and this time 96/91, again, they said this was still good since he grew so much:) We'll take it!!

On the way to the clinic, he asked me if he was getting any shots at the drs and I said no. Then he asked if he was getting a throat culture, I said yes, and he said "Yea!! I LOVE those!!" Gotta love this kid!! How he can love it when they shove something down his throat like that is beyond me!! But I am VERY glad he doesn't mind it:) It makes my job a lot easier;)

Lil' Chris was VERY excited to tell the dr that he has been eating more foods...he told them how he ate FOUR slices of pizza the other night, and how he LOVES Mac n Cheese with cut up hot dogs in it now!! He calls it his Favorite Mac n Cheese and Favorite Pizza :)

He was also excited to tell his dr that he can now read over 50 words!!! He even read some to the drs, since that's what we were doing in between all the drs coming in and out. I was telling the drs that we just had a conference with his teacher that morning about whether or not he is ready to move onto 1st grade next year or not. He is a little behind the other kids, and that's my fault, b/c I haven't worked with him enough on reading and everything else. I've been trying really hard to work with him everyday and in just one week he has made HUGE strides!! If we keep it up over the next 2 months, he may still be able to go to 1st grade. We'll see. 

He seems to do well with me, but in class I guess he doesn't participate much. And when the teacher does one on one with him, it's very hard to get the answers out of him. We aren't sure why. Maybe b/c he is shy, maybe b/c he is afraid he will get the answer wrong, maybe b/c he has anxiety about it or something...not sure. The dr suggested that he may know the answers, but has a hard time expressing himself, and that maybe he should see a Speech Teacher/Therapist or something to see if that would help. I would hate for him to be held back a year, but if it's best for him, then we will. I don't want him to struggle every year trying to catch up. I just hate thinking that he won't graduate until he is 18 instead of 17. With his life expectancy already short, I just hate for him not to get out and live life as soon as possible...on the other hand....it gives me one more year to somewhat control his meds and make sure he is taking them;) God knows best, and whatever is His Will, we will go along with it and be happy:) It was cute when the dr asked him what his favorite book for Mommy to read him is and he said "The Bible." :) Last year when his teacher told him to bring in his favorite book, he wanted to take his Bible...one proud Momma here:)

We took his Acapella to the drs and the PT said that he is doing it well, but should breathe longer when doing it and count to five when breathing out and when huff coughing. She also suggested that we should do it after each of the 3 sets on his Vest, but we don't have to. I don't see that he needs it right now, since he isn't coughing, but when he does have a cough, I def agree! I told the dr that I can't remember the last time he's had a cough! I LOVE it when that happens:) When I looked it up on my blog, it's been 4 months since he has had a cough:) YEA!!!

I asked the dr why it took longer this 2nd time around on administering TOBI and she said to check the setting on the compressor. It should be set at 40 or 45. In the hospitals they use 50, but it might make the hose pop off. So I checked ours and it was a little below 40, so I changed it. To check it, all you have to do is turn it on and put your finger over where the air comes out and look at the gauge and turn the knob. We have the Moblaire 50psi compressor. We LOVE it!!

I had to cancel my Arbonne CF fundraiser for tonight:( I only had one or 2 people say they would come. It's my fault for trying to do it on a Fri night. What was I thinking??? You can still order online until 3/1 and 35% will go towards a CURE for Cystic Fibrosis!! Just let me know! Check out what they have at Arbonne.com. From what I hear...those who use Arbonne products swear by it and won't use anything else!! The party has been rescheduled for Thurs March 7th at 6p at my house. We are going to do a Spa Day!! So get ready to be pampered girls!! I can't wait!!

My next CF fundraiser is on Tues March 5th at my house at 7pm for a Thirty-One Party!! YEA!! Last time we raised $750 for CF!! Hopefully we can do it again! Click here to get started shopping and ordering today!! 

If you haven't signed up to walk yet, click here to register under my team, or you can start your own team and be a team leader! The walk is on Sunday May 5th at 11am at the pavilion by Ida Sue School!! 

 My birthday is this Sunday, and all I want again this year is a CURE for Cystic Fibrosis!!! So please click to donate!!! It sure will make my day:)

I will let you know his culture result when I get it. I will call them next week to find out. Please please please pray for no Pseudomonas!!! If he cultures Pseudo again, then he will be on TOBI every other month...which means an hour of treatments in the morning and at night:( :( :( His next 3 month check-up is on 5/8/13 at 10:50am, a few days after our walk.
Thanks,
M 
PS. My husband and I will be working on the new CF commercial soon for our walk:) YEA!! 

TOBI/Cipro Update & Reading!!!

Lil' Chris finished his Cipro the other day and only has a couple more days of TOBI left! YEA!!!!!

He still is doing GREAT and doesn't even have a cough or anything!! You would never know by looking at him that he has some bad bacterias deep down in his lungs just looking to cause some major trouble.

It was rough this 2nd time around with the TOBI, b/c for some reason it took longer to administer than the last time he was on it. I looked back on my blog, and on 11/10/12, I blogged that it only took 13-15 minutes for the TOBI, but this time around it has been taking like 25 minutes! That's a big difference for a little kid! Even Lil' Chris started complaining by saying, "I don't want to do TOBI, b/c it takes too long!" Poor kid. I think it might have been b/c Nurse P sent us the wrong neb cup. It was the same, but it came with a different mouth piece(one to attach to the mask, which we don't use), so we took the mouth piece from the last one and used that. We washed the old neb cup a couple times, but it still had that hard residue on it that wouldn't come off down in the bottom:( I guess we didn't wash it well the last time we used it...prob b/c we were thinking we would never have to use it again...wishful thinking I guess. Oh well, lesson learned.

He has a cf clinic apt on 2/20 where he will get his 3 month check-up and another throat culture to see if the Pseudomonas is still there. If so, then we will do TOBI every other month, but not Cipro. Praying for no Pseudo or anything worse!!!

On a good note...he has been doing really well with learning to read!! I've been working with him the last few days and he can now read 30 words!!! Tonight he read most of a book to me at bedtime! I was soooo proud of him!! I made flash cards with site words on them. We started out with 10 words the first day, and then we have been adding 10 more words each day! He's doing really well! His incentive...a freeze pop:) This kid is easy:) LOL We are praying he will get to move onto 1st grade next year and not have to go to all day Kindergarten. Right now he is in 1/2 day Kindergarten. 

We might be able to skip Preschool for Ayla, b/c she can identify all the letters, colors, shapes, and has been reading words too, b/c she has been watching me teach Lil' Chris!! We even play games as to who can find the word the fastest! I love it!! They are both so competitive and this helps keep Lil' Chris focused:) Ayla is very bright for her age...she knows the order of the rainbow(I didn't even learn that til I worked retail and had to learn to merchandise LOL:), and can tell you who's birthday is next..."Forst, it's my birfday, then Mommy's, then Chris', then Daddy's!" is what she says:) She just needs to learn to talk right. She says "f" for "th" and "o or y" for "L" and a couple other that I can't think of right now, b/c it's late;) If you ask her to spell her name it sounds like "Ayoa", but she says "yike" instead of "like". LOL I've been trying to work with her on that, but she gets frustrated and angry when I correct her. Oh, and she skips the number 13 when counting, and when I asked her why, she said that she can't say it, she just gets embarrassed...poor thing. It's a work in progress, she'll get there.

Thanks for all your prayers,
M
PS. Please keep Tricia(adult CFer) in your prayers as she was not able to get listed yet for a double lung transplant that she desperately needs.  Also please pray for Stacy A. from my work with Bronchiectasis, which is like CF. She hasn't been feeling her best and had to get a Picc today:( Get well soon, Stacy!!

CF Walk and Fundraisers Update!!!

I got confirmation to go ahead and make another commercial for our Cystic Fibrosis Walk!! WOOHOO!! We LOVE you Clear Picture!!!! Thanks so much for donating this air time and helping us spread awareness about CF and our walk!!!!

I also got confirmation that Domino's will be sponsoring our food again this year!! Thanks so much Vic!! Love me some Domino's pizza, it's the BEST!!!

More great news...Panera Bread is getting more involved this year!! They are not only going to donate bagels, but are going to give out gift cards too and possibly do Pin-Ups and more!!! WOOHOO!!!! Isn't that GREAT news!!!

Denna was able to get The Faithful Little Cupcake to do Pin-Ups for the whole month of Feb!!! That's AWESOME!!! They will be doing them at both locations, so if your in town and want something sweet in the month of Feb, stop by The Faithful Little Cupcake and buy a Pin-Up for $1 or more and put your name on it to show your support for Cystic Fibrosis!!  :) Please help me spread the word!

I've started to set up some fundraisers too. I have one at Alice Noble Ice Arena on 2/13, and an Arbonne Party at my house on Fri 2/22 at 6pm!! 35% of Arbonne orders will go towards a CURE for CF!! Arbonne is a health and wellness company with all natural, safe products...skin care, nutrition, makeup...so many options! I hope you can make it! If so, please email me or leave a comment and I will contact you with my address:) Also, for those who can't make it to the fundraiser, but would like to order, I will post a link and you can still help out CF by ordering even if you live in another state!! :) 

Thanks everyone for all your support for Lil' Chris and CF!!
M
PS. Lil' Chris is still doing great! He has a hard time taking the Cipro still, but at least he isn't hiding them this time;) Please pray that the TOBI and Cipro knock out the bad Pseudomonas in his lungs!