8th Annual CF Walk is this Sunday!!

Our 8th Annual Cystic Fibrosis Walk is THIS SUNDAY, May 7th at 266 Oldman Rd in Wooster!! Check in is at 11, and the walk begins at noon! It's free to go and there will be free food, snacks, drinks, balloon animals, fire truck, ambulance, police car possibly with K9's doing tricks, craft table, and more!! Let me know if you are coming!! It's fun for the whole family!! Please click this link to register to walk or donate/sponsor us to walk!!

BIG THANK YOU to those who have donated so far...Cara, Eva, Rafe, Danielle & Steven, Al & Nancy, Dad, Rachel, Marie & Sam, Dustin H, Mom, Stacy W, Martin & Jamie, & Dawn!! Thank you for helping Chris win the CF teddy bear and CF blanket too!! He LOVES them!! :)

http://fightcf.cff.org/goto/A_Cure_4_Chris 

I know I haven't posted in awhile, but like I always say...No news is good news!! :)

I haven't had time for much lately, because on 1/29/17, I got promoted to Store Manager of the Akron Kohl's!! :) I LOVE it and have a GREAT team!! Unfortunately, it doesn't leave me much time to blog, or do as much fundraising as I would like. Luckily my Mother-in-Law lives close and has been a tremendous help in getting things ready for our walk this Sunday!! Thanks Oma!! :)

As for an update on Chris, he has been doing well. He is up to 3 enzymes with every meal and snack now(he was at 2 with the new red pills). He also takes a chewable vitamin now instead of a gel one. He hates it, but we can't get the gel ones anymore:( He is still taking Prevacid daily and Claritin. His nose runs a lot during allergy season, so we are going to look into a different allergy medicine. I think he may have become immune to the Claritin because they keep him on it all year long and he has been taking it for a few years now.

He still does his Vest 30 minutes in the morning before school and 30 min at night before bed. Thankfully he has only had 1 bad cough this past year and only had to take an antibiotic once. I think it was right before Christmas. He still does well with his Pulmozyme neb every night. He even washes his neb cups now!! :)

The only area of concern right now, is that he has had to use his puffer(inhaler) more often recently because he gets these weird chest pains. We try to make it go away with manual CPT too. It usually seems to happen when he is at the soccer fields. So we have started giving him his puffer before we leave for practice or games now. He also has been getting a lot of stomachaches off and on. We mentioned it to the dr last time and she recommended he try new enzymes with his meals and snacks. They gave us one bottle to try, but it only has enough for one week. Not sure that's long enough to tell, but we are going to try it once school is out so the school doesn't get confused with which pills to give him. We are praying that this is the answer. Chris doesn't want to take them though, because he will have to take 5 of them instead of 3 with each meal and snack. I'll let you know how it goes.

He has his annual CF clinic appointment coming up in June where he gets his bloodwork done and is usually a 3-4 hour visit. Please pray all goes well and he gains weight and has a good PFT!!

Thanks again for all who donated and keep up with Chris' CF journey!! I'll try to post again in less than a year this time;p LOL

M

Culture Result!! / Pulmozyme WORKS for Lil' Chris!!

We finally got his throat culture result back and it was NORMAL AGAIN!! THAT'S 3 TIMES IN A ROW!!! WOO HOO!!! This momma is sooooooo excited!!!

I'm hoping and praying he goes the whole school year with all normal culture results! He goes for check-ups at the CF Clinic every 3 months, so his next appointment is on 1/8/14. Last year it was the end of October that he had his worst culture result...Pseudomonas:( But I guess we successfully eradicated it, b/c now he has had 3 NORMAL cultures!! YEA!!

So for now, no new changes to his daily routine. He still....
-takes 8 pills every morning, 
-5 pills with every meal and snack, 
-we try to feed him as many calories as we can(I wish I could eat whatever I wanted! lol), 
-he does his Vest for 30 min in the morning before school and 30 min at night before bed, 
-and he does his nebulized medicine called Pulmozyme every night.

I just wanted to say that we really do appreciate all that you have donated over the past 6 years, b/c it really helps bring out new and better meds for all CFers!! I gotta tell you...Lil' Chris has been on Pulmozyme for over a year now(he started last July) and he has only had one bad cough!! THAT'S AMAZING!!! He used to get 4-5 bad coughs a year! He used to be on antibiotics all the time it seemed! In the last year, the only antibiotics he was on was Omnicef until they discovered he had Pseudomonas, then they switched him to TOBI and Cipro. He did this one month on and then one month off and he hasn't been on any antibiotics since...and NO BAD COUGHS SINCE!!! WOOHOO!!! THANK YOU PULMOZYME!!! What Pulmozyme does is, it thins the mucus so it can be cleared out of the lungs much easier. CFers get thick, sticky mucus that builds up in their lungs and can cause really bad bacterias, like Pseudomonas, to grow. It is usually very hard to get rid of too, so we got very lucky. 

During his reading homework, he said he could even read it with his eyes closed;p LOL!!! It was sooo funny, b/c he kept peeking;p LOL!!!

Thank you everyone who prays for Lil' Chris on a daily basis!! Keep the prayers coming that he never gets Pseudomonas or anything worse every again!!

Thanks,
M

Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

Day 3 CF Awareness / Vest 1,540 Hours

Lil' Chris has officially passed the 1,500 HOUR mark on his Vest!!! Sad...but glad that we have been diligent in making him do his Vest every morning and every night for 30 minutes each since he was 11 months old. The Vest helps shake his chest, sides, and back to help loosen the mucus in his lungs so he can clear it out easier and breathe easier.

....kinda funny...I actually started this post over a month ago, so now he is up to 1,540 or something like that:) LOL Can you tell I've been busy getting ready for the walk this Sunday?? LOL :)

For those who don't know, Lil' Chris has to do his Vest or this airway clearance technique 2 times a day 30 minutes each for the rest of his life...until a CURE if found!!  Ya know...before when I used to write that, a cure didn't seem like it was ever coming, but now...I really believe he might actually some day NOT have to do his Vest anymore!! That's all thanks to you who donate each year to help us get one step closer to a cure!! THANK YOU SOOOOO MUCH!!!
M 

Thank You Al & Nancy!! / Gifts by Nancy

Just wanted to say a BIG THANK YOU to 

Al & Nancy S.

for donating to our GREAT STRIDES walk for a CURE for CYSTIC FIBROSIS for Lil' Chris and ALL who suffer from CF. They have both been HUGE supporters from day 1!! Their love and prayers mean soooo much!!

 

THANKS AL AND NANCY!!!

Nancy is sooo talented, when Lil' Chris was a baby, she made all his bibs and receiving blankets and they were perfect!! They were great for when he did his Vest too, b/c they could fit over top of it and cover most of it so if the shaking made him spit up, it didn't ruin his very expensive Vest.

 

 Here is a recent one of her burp cloth and famous bibs

She can do all kinds of stuff from personalized bibs to bags to towels!! You name it, she can do it!! She can make shirts with customized CF logos or sayings too! Message her if you have an idea & she will work with you! 

 

Here is a cute Easter shirt :)

 

Check out her site on facebook... https://www.facebook.com/GiftsByNancy

Thanks,

M

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

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!! 

CF Update / Bad Virus or something???

TOBI arrived Wed evening, but we didn't start it til Thurs morning. He has been doing great with the TOBI, but he HATES the cipro pill b/c it is chalky. I hate Cipro b/c he can't have any milk or cheese 2 hours before or after taking it...I'm sure he hates it b/c of that too;p The reason is, b/c it makes the Cipro not work as well apparently.

Thurs he came home from school with some kind of virus. I was very worried it was the flu, but thankfully it seems like it was just a 24 hour bug or something. He had a very bad headache in the middle of his forehead, a sore throat, and a bad tummy ache. He was just lying around with no energy. Then around 6pm he started throwing up off and on until 11pm. He was throwing up like he had Soy Protein which he is allergic to, but he usually doesn't have the other symptoms with it, so we aren't sure what he had. Today he seems fine. He took all 8 pills and ate his whole bowl of cereal and has been running around playing with Ayla!! Then he did his Albuterol, Vest, and TOBI. For some reason, the TOBI seems to be taking a lot longer this time than it did a couple months ago. Not sure why, it's the same dosage. Maybe the setting on the machine got bumped. I'll have to check it out.

I almost took him to our Pediatrician yesterday, but our CF clinic(by the time they finally got back to me) said not to take him b/c it's too dangerous for him b/c he could pick up something worse. I almost still took him, but he refused to go and I thought maybe that was a sign. So I didn't take him and I am sooooo glad I didn't b/c he is doing so much better!!! Who knows, if I would've taken him, he could've picked up the flu that's going around like crazy and then possibly end up in the hospital. Good thing Lil' Chris knows his body;-)

Unfortunately Ayla is complaining of a sore throat today, so I'll have to keep a close eye on her:(

I have soooo much to do to get ready for the walk and fundraising!! No better place to make a list than on my blog, right?? LOL...

1. I have to make a new fundraising video or at least update my old one;p I've used that one like 3 years in a row, so I really want to make a new one, but it's so time consuming, so we'll see. 
2. I also have to start working on the 30 second CF commercial for Clear Picture. So far I have pics from Denna with Aden doing his treatments. Thanks Denna!! She is really on the ball!! I still have to take a few pics of Lil' Chris;)
3. I have to get all the food nailed down for the walk...Dominos, McDonald's, Panera Bread, Frito Lays, Buehler's fruit, and ice from Speedway.
4. I have to contact the radio stations
5. I have to nail down some of the entertainment for the walk...Dr Dave who makes the best balloon animals and Pat Catan's for a craft table. 
6. And most importantly...I have to raise money for a CURE!!

Samantha, Denna, and Alma are doing a lot to get ready too...
Samantha is going to contact the police dept and fire dept to try to get a police car, ambulance, and fire truck for the kids at the walk. She's also going to contact the newspaper to get an article about the walk. Try to get water donated for walkers. And Samantha, Denna, and I are working on getting prizes for the walkers:)  Alma is going to make her WONDERFUL cookies again and maybe some of her famous cupcakes too;) She is also going to try to get water and soda donated. The 4 of us are also going to try to put together some signs, one for each of our kids to put up around the walking path with info about our kids and their pic on it:)

So, lots to do and only 3 months to do it!!! It's going to be soooo much fun!!! I can't wait!!

Sign up to walk today and if you can't walk, but would like to sponsor me, click this link as it is 100% tax deductible and will get us one step closer to a CURE for Cystic Fibrosis...

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

 
Thanks for your continued prayers that Lil' Chris kicks this Pseudomonas out!!!
M

TOBI is All Done / CF Fundraiser!!

WOOHOO!!! TOBI ended yesterday!!! When Lil' Chris did his Vest this morning, it was so weird not doing any breathing treatments with it!! That's the first time in 28 days, which seems like we've done it from day one! LOL

HE didn't even notice, but inside I was super excited!! I even got to set my alarm a little bit later, which was soooo nice with all the crazy hours I've been working lately!

Some parents have a little celebration when their kids finish TOBI, but I didn't do that with Lil' Chris. I just didn't want to bring any attention to it, since he did so well with it. I feel like if I celebrate it being done, then the next time he has to do it, he might not want to. IDK.

The one I really wanted to celebrate being done was the Cipro!! That was a pain him not being able to have any dairy products 2 hours before or after the pills! He didn't like that either, but he understood and cooperated. He really is such a good kid!!!!!!!! Except....he DID hide 5 of his Cipro pills under the toy box in the living room!

My husband found them when he went to put up the Christmas tree. My husband yelled at him and then when I got home from work, I yelled at him too. I know he only did it b/c he didn't like the chalkiness of the pill. He's used to the capsule type from his enzymes and Prevacid, or the gel tab type from his Aquadek vitamin pill. BUT, I couldn't let him go on thinking that doing stuff like that is okay. After I yelled at him, I gave him a hug and then explained to him how important it is that he does EXACTLY what the doctors tell him to do. It's only for his own good and to help him get better or not get any worse. He seemed to understand, and took the 5 pills fine over the next few days.

I tried to tell him to put it UNDER his tongue like I do with my chalky lactaid pills, but he kept saying "Then how do I swallow them?" I tried telling him that when he takes a drink, they will float to the top and go down easy and they never touch the tongue and he never has to "taste" them. He couldn't understand how they would float with the liquid, so he continued to make us put the pill on the back of his tongue...practically gagging on it...and then he would swallow it. He never tried it my way, but I don't care as long as he takes them and doesn't hide them again!!

I called the CF clinic and we go back on the 17th to get another culture done to see if the Pseudomonas is gone or not. It will just be a culture visit, but if he starts a cough before then, he will be seen by his dr. Please pray that the TOBI and Cipro worked so that he doesn't have to do them again in 28 days!! As of right now...NO COUGH!!! PRAISE GOD!!!!

Also, please pray for our dear friend Stacy A. She has Bronchiectasis, which is like the sister disease to CF...the same lung issues, but with no digestive issues. She was just admitted to the hospital and just got an IV and may have to get a PICC tomorrow. Please pray she gets well soon so she can get her PFT's back up where they belong so she won't be so short of breath, and so she can return to work. We miss her at Kohl's!! WE LOVE YOU STACY!!! STAY STRONG AND GET WELL SOON!!!

The CF fundraiser the other day went GREAT!! It was so much fun!! BIG THANK YOU to Carrie G for suggesting CF be the cause!! And BIG THANK YOU to each of the 6 different parties for doing a raffle for CF!! And BIG THANK YOU to Deborah for letting us do it at her Garden Market for free!! And BIG THANK YOU to everyone who came and supported CF(It was great getting to talk to Mary, Daniel's mom)!! And one more BIG THANK YOU to my fellow Kohl's associates (Kim S, Roberta, Jolleen, and Cheyenne) for volunteering to do the event to get the $500 for a CURE for CF!! WOOHOO!! I believe that makes $5,000 raised for CF this year alone from Kohl's!!! Gotta love Kohl's...especially this holiday season as they are giving away one FREE purchases EVERY DAY at EVERY STORE and ONLINE from now til Christmas Eve!!! I LOVE working for a company who helps the community out as much as Kohl's does, esp when they let me give away the free purchase...BEST FEELING EVER!!! BIGGEST THANK YOU TO KOHL'S!!!
Thanks,
M
PS. We got our Christmas pics taken tonight, so be on the look out for them over the next couple weeks!!! They all turned out soooooo cute!!! If you would like a Christmas card, let me know!! I know Lil' Chris likes getting pics of other CF kids too:)

TOBI and Cipro Update

Lil' Chris is doing GREAT with his new TOBI treatment!! I'm so proud of him!! I can't believe we have gone through a couple of packs already! They come in packs of 4. He is doing GREAT taking his Cipro pill too!! 

So far he hasn't said anything about the taste of the TOBI, and he hasn't said that his tummy hurts from the Cipro, but everyday that I have been with him since he started it, he has not gone #2. I've asked him if he has gone, and he says that he doesn't have to. Hmmmm, I'll have to keep a close eye on that, b/c a lot of CFers have problems with this and end up in the hospital being blocked up and sometimes needs surgery or something. The thick sticky mucus in CFers don't just clog up the lungs, they unfortunately clog us other vital organs too:(

When I called the clinic on Tues, the nurse told us that we could switch Pulmozyme to night time, that way we only have to do TOBI in the morning before school. TOBI takes about 13-15 min. Pulmozyme only takes about 6-8 min, but it's just hard, b/c he can't eat his breakfast while he does these treatments. So we are switching to do Pulmo at night. This will give him more time to eat breakfast before school. 

Also, the nurse said to do his Albuterol puffer before treatments to open up the airways. So, the order of his treatments are Albuterol, Vest, TOBI in the morning and Albuterol, Pulmozyme, Vest, TOBI in the evening. Oh and Flonase nasal spray every am and pm:)

Lil' Chris is coughing and has a stuffy nose right now, but it may be from the meds. I've heard that you can get a "TOBI Cough" when taking it, also a raspy voice. His voice hasn't changed yet, but he is having some productive coughs, which is good! He needs to get it out!

Ayla's cold and cough was starting to go away, but now it's back:( I took her to get her flu shot the other day, and I asked if she could be seen for her cough, but they said they didn't have any openings:( So, we bought some over the counter cough medicine to help her out. So funny...the other day I tried to give her medicine in a pill form and gave her a drink, because that's the norm in this house...well, after she took a sip and looked at me like "what do i do now?" I realized she doesn't know how to swallow pills yet;-) LOL Lil Chris has been swallowing pills since he was 2 and she's almost 4 and can't! I'm not used to that! LOL

Chris and I went to a CF Volunteer Appreciation Dinner the other night and it was so Great seeing all our fellow CF parents that we see each year at this dinner! We actually all got to sit at the same table, except Tina sat at the table next to us, b/c out table was full. We heard from 2 Great doctors and they went over the VERY promising drugs coming out for our kids! It may take 5-10 years for the drug to come, so we just have to try and keep our CFers as healthy as possible until that CURE comes, b/c....it IS COMING!!! I CAN FEEL IT!!!
 
I couldn't have made it this past week without the help and great advice from some awesome friends and my awesome fellow CF parents that I have met thru this blog and facebook!! You guys were there right when I needed you the most!  BIG THANKS to Stacy A., Steph W., Alma, Mary, Samantha, Heather V., Angela, Tina C., Kim, Denna, Kirby, Heather L., Leslie, Marjorie, Tina P., Lisa, Rebecca, Erin, Harriet, Abby, Tabitha, and Allison. I can't thank you all enough!!

As I was doing my devotions the other night before bed, I came across this verse.."Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." (John 9:3 NIV) I have FAITH that God will take away this horrible Pseudomonas bacteria in Lil Chris' lungs so that he can grow old and do GREAT things for God!!! Thank you Lord for having this verse in my devotions that night! I really needed it:) I think a lot of parents with CF kids or any terminal disease should remind themselves of this verse daily!

Thank you all for your prayers, and please keep them coming that the meds work and kicks the Psuedomonas out this first round!!

Please keep Tricia in your prayers too, b/c she finally got listed for a 2nd double lung transplant!! It's always riskier the 2nd time, but we have a God that hears our prayers and answers them!! Check out Nate's blog post...http://cfhusband.blogspot.com/2012/11/listed.html
Thanks,
M

1300 HOURS on the Vest

He hit the 1300 HOUR mark on his Vest a month or so ago. I had taken a pic of it, but it was one of the ones that got erased on my phone. Here is a pic from the other day at 1335 hours. 

Can you imagine your kid sitting still for that many hours from age 1-5 years old?? I give Lil' Chris a lot of credit for all he has to do on a daily basis. 

He's such a good kid 

and hardly ever complains!!

As for a CF Update, he is doing great!! Keep the prayers coming daily, they are working!! :) He has his next CF clinic visit on 10/24, so pray he continues to stay healthy and his next throat culture is normal!

Thanks,

M

1st Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
M

Pulmozmye Update, 4th of July Pics/Video's, and Swing Flip

Lil' Chris is doing GREAT with this new nebulizer routine!!  He doesn't mind it at all, and on day 2, he actually asked to do more afterwards;-) I told him it's only one time a day and he got a lil' sad. What a kid! He takes any new thing the dr.'s throw at him SO well!! He AMAZES ME!!

I, on the other hand, am still getting used to it. I'm surprised I haven't forgotten yet since we have been so set in our ways doing the Vest in the morning. It really helps having the nebulizer machine right next to the Vest machine, b/c I've caught myself about to put his Vest on and then I see the nebulizer and I go and get the Pulmozyme out of the fridge real quick;-)

So, I'm still learning a lot thru this whole new process and luckily I have a GREAT CF community to help me out with all my silly lil' questions. CysticLife.org is so great to have around in times like these...

1. We are supposed to wash it afterwards with a clean paper towel and soap and warm water, THEN sterilize them after each use. Oops, didn't do that the first time, we just rinsed them.
2. You can't pour the Pulmozyme in the cup and then let it sit on the counter...it leaks :b Learned that the hard way!
3. Boiling water is HOT!!! I about burned my fingers trying to fish them out of the water after it was in the microwave for 6 minutes and I even let it sit for a couple of min before I tried to get them out!! OUCH!!
4. Lastly, it's hard to tell when the medicine is done. I try to shake it towards the end and then more comes out, but still it's hard to tell and I hate to waste any esp since it's outrageously expensive! Thank the Lord for BCMH!! Please pray we never lose BCMH!

I hope you all had a Happy and Safe 4th of July!! We had a great time at the pool and BBQ at Oma and Opa's house with John, Andrea, and Kennadie!! Afterwards, we went to the soccer fields where we have our CF walk every year, and they had some special things going on, and one was the kids got to sit in some army vehicles and got to turn them on, honk the horn, and step on the gas!! They LOVED it!! They kept asking where their buddy Spencer was and if he drives these :-) I think they are going to have lots of questions for Spencer when he returns home from the army in a month or so;)

Here is a pic of the kids about to watch the Children's Hospital Helicopter, "Air Bear", take off. They liked exploring inside of it, while I secretly prayed they would never have to use it!!

Here is a video of the kids watching the helicopter fly off. It takes a while, but at the end they pray with me that they never have to go in one of these. Too cute...and sad knowing that it's a possibility for Lil' Chris someday:(

After that was fireworks time!! They covered their ears until half way thru, but then they put their hands down and realized it wasn't so bad after all;-)

Well, Lil' Chris continues to do GREAT!!! He is having no side effects from the Pulmozyme and I think he is coughing less too now that I think about it:) YEA!! Right now, he is having fun playing outside on his swing set:) 

On Tuesday, we went looking for a nice new swing set since he loves playing on his tiny old hand me down one, but my goodness they are expensive!! The one we want is white plastic over wood, so then we don't have to worry about splinters, or any mold or rotting or having to stain it each year, but it's like $4,000!!! YIKES!!! Of course it had to have a lil' playhouse which Ayla LOVED, b/c it had windows and a door:) She kept going in it and wanted us to knock to come into "her house"...too cute!! Oh well, maybe some day. On second thought...we might need one sooner rather than later, b/c he just almost flipped the whole swing set by swinging too high, and he just taught himself how to do flips, which is ok, but I'm afraid he might hit his head, and he loves hanging from the top...I guess there's not much else to do with it. LOL I think he needs a twirly tube slide, a rock wall, a rope wall, a horse swing thing, and a much taller, faster slide! He would be in Heaven!...and so would Mommy knowing it's much safer :) lol

Here is a video of Lil' Chris trying to make the best of his swing set(which we are very grateful for, otherwise they would have had nothing all these years, he's just outgrown it now;) and of course him doing a flip!! He was so excited the first time he did it!! I just can't believe he taught himself and he didn't hit his head! Still scares me!

Thanks for checking in with us and please keep your prayers coming!!

M

PS. Remember baby Chaia?? Well she just turned 1 the other day!! Amazing what prayer can do! Thank you all for praying for her, she still needs it as she has a long road ahead of her. Also, please pray for some fellow CF friends...Phennyman and Tricia. Phoenix had surgery the other day and is still in the hospital, and Tricia is going thru so much right now, she has an infection in her sinuses and she continues to loose weight and her breathing difficulties are increasing. Her husband, Nate, keeps a blog about her(which is what got me to start this blog so many years ago;)...www.cfhusband.blogspot.com. Please keep their families in prayer too. Thanks.

1st Nebulizer...Pulmozyme Video

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The above video is of Lil' Chris doing his very first nebulizer treatment!! Not bad for being a 5 year old CFer!! Most CFers start within their first year it seems like! He still doesn't even seem like he needs it, but from what I've gathered, it will only help him in the long run.

His first inhaled med is called Pulmozyme. It's purpose is to thin the mucus. People with Cystic Fibrosis produce very thick, sticky mucus that clogs the lungs and other organs making it harder to breathe. Pulmozyme helps thin the mucus, then the Vest helps clear the mucus out. After his Pulmozyme this morning, we did his vest about 20 minutes after, and I tried to get him to cough after the Vest, but it didn't seem to do much. I guess I was expecting a wet sounding cough that would produce mucus, but it was just dry. Not sure if this is a good sign or not.

I have always been a little scared of nubulizers with Lil' Chris, b/c I know it's very important to keep them sterile. If we don't sterilize them properly, then bad bacterias could build up on it and that would NOT be good for Lil' Chris. We were told to do it right after each use, b/c otherwise the medicine will build up on it and it will be hard to scrub it off. We rinsed it with hot water, then put all the pieces in a bowl and microwaved them for 5 minutes right after his treatment. Then when done, we shook the excess water off and let them air dry on a paper towel. We can not rinse them off with tap water, b/c that would defeat the whole purpose. I've been told that we could use a baby bottle cleaner, so I may have to pick one of those up;-)

This is all a new experience for us, so any insight would be much appreciated!! :)

Lil' Chris is doing GREAT!! He doesn't cough that much, but when he does, it is dry so that is VERY good!! A couple of weeks ago, he was waking up in the morning with lots of build up in his nose, but once he would blow a few times, he was fine. He complained of a sore throat a couple of days, and it got me worried he was getting a cold, but I guess it was just allergies. Thank the Lord!!

Right now, he is living it up having a blast on his Summer vacation, esp the last 4 weeks with his cousins!! Adding the Pulmozyme now will help him get into a routine for when Kindergarten starts this Fall. We decided to start the Pulmozyme this week, b/c I have off work this week and thought it would be good for me to be there with him for the first week so he can get used to it.

On another note...after my vacation this week, I will be going back to work on Mon 7/9 as an Assistant Store Manager of the Wooster Kohl's!!! WOO HOO!! I've finally been promoted AND within the same store!! I can't wait to get started, but this relaxing week with my loves will be so nice:) Thank you so much to all who were praying for this promotion and for me to get to stay at the same location. It really means a lot to me to get to stay so close to Lil' Chris and my family. Family time is so precious to me...to any family with a family member with a terminal illness. I'm just so glad I have the BEST DM EVER to promote me within the same store!! That almost never happens! THANK YOU JASON!!! THANK YOU LORD FOR ANSWERING MY PRAYERS!!

Have a GREAT week, I know me and the kids will...and Daddy when he has off work;-) lol
M

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M