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

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 Med List Expense/BCMH Approval!!!

GREAT NEWS!!!!!

WE GOT OUR APPROVAL LETTER IN THE MAIL FOR BCMH(Lil' Chris' secondary insurance)!!!! WHOO HOO!!!!!

It's a good thing too, b/c the same day we got his approval letter, we also got a statement in the mail saying that his $1,500 for 2 of his meds was paid for!! Praise the Lord!!!

I found this cool price list for most CF meds...https://www.cfservicespharmacy.com/ProductsandPrices/

Check it out to see how much you/your child's meds are without having to rummage thru all your bills and statements:)

Here is a breakdown of Lil' Chris' meds...

Enzymes=Creon 6,000= 5 with every meal, about 25 per day=$1,200 for 30 day supply

Prevacid=once daily=$250 for 30 day supply

Aquadeks=once daily=$42 for 30 day supply

Pulmozyme=inhaled once daily=$2,700 for 30 day supply

Albuterol Puffer= (was not listed)

Flonase=$102

When he cultures Pseudomonas, he has to take the following...

Cipro=$530 for 30 day supply

TOBI=twice daily for 28 days=$8,000 

TobiPodhaler=$8,000 (this just got approved, so he may take this next time he cultures Pseudomonas instead of TOBI, b/c it cuts treatment time down by about 40 minutes per day. I was surprised to see it costs the same as TOBI)

He also takes Claritin daily too, which is not listed b/c it's for his seasonal allergies. Not sure how much it is, but our insurance and BCMH covers that also thankfully. I think it's around $40.

So, our grand total for just one month without TOBI and Cipro=$4,334

Grand total with TOBI and Cipro=$12,864

Grand total for one YEAR without TOBI and Cipro=$52,008

Grand total for one year with TOBI and Cipro every other month=$103,188 

WOW!!! CYSTIC FIBROSIS IS EXPENSIVE!! 

SO THANKFUL FOR BCMH!!!

I don't know what we would do without it!!

THANK YOU BCMH and THANK YOU LORD FOR ANSWERED PRAYER!!!

My advice to other CF families is to get with your CF clinic's social worker to find out about any other financial assistance programs your area might have. BCMH is for my state, but your state may have something similar. Also, even if you think you may make too much and won't get approved...just apply anyways. It doesn't hurt anything by applying. You never know, you might get approved anyways, b/c of how serious a disease CF is! If you get denied one year, apply again each year. Like I said, it doesn't hurt to try...your effort will pay off once you get approved:)

Please pray that we continue to get approved each year as you can see the impact it has on our family.

Thanks,

M

PS. Lil' Chris is doing GREAT! NO COUGH!! THANK YOU JESUS!!

Big Thank You / New Treatment Coming / Update

BIG THANK YOU to....

My mom

Uncle Joe & Aunt Diana

Aunt Donna

Al S.

Audra & Jon

Thank You Guys So Much for your generous donations to A CURE for Lil' Chris and ALL who suffer daily from Cystic Fibrosis!!! We ALL appreciate it sooooooo much!!!

For those who would still like to donate, it's not too late, just click here. Remember, it's tax deductible!! :) I can't believe our walk in less than a month away!!!

They are getting soooo close to a CURE! Better meds keep coming, which is FANTASTIC!!! 

Here is a New Treatment Option for CF Patients coming soon...

FDA approves Novartis TOBI® Podhaler™for certain cystic fibrosis patients,
the first and only dry powder inhaled antibacterial in US!!

TOBI Podhaler is portable and requires no nebulizer, refrigeration or power source to deliver the medicine

TOBI Podhaler is indicated for certain cystic fibrosis (CF) patients with Pa and shortens treatment time by about 70% compared to nebulized TOBI®
Novartis announced on March 22, 2013 that the US Food and Drug Administration (FDA) has approved TOBI® Podhaler™ (tobramycin inhalation powder) 28 mg per capsule for the management of cystic fibrosis (CF) patients with Pseudomonas aeruginosa (Pa) bacteria in the lungs. Pa is the leading cause of loss of lung function in CF patients. TOBI Podhaler is anticipated to be available in the US in the second quarter of 2013.

For more information, please visit: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm345123.htm

This will be soooo GREAT for Lil' Chris if he can take it!! It will cut treatment time for TOBI from 25 min to a few min. in the morning and evening each!! WOW!!!!

As for an update on Lil' Chris, he is still doing VERY well!! No cough, no cold, no nothing!! We are so blessed to have to have so many people praying for him daily! We can't thank you all enough for all that you do for him!!

M

PS. BIG news coming soon ;)  

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

Soooo Needed to Vent...Pseudo is back for 2nd time;(

Sorry it's been awhile since my last post. The kids and I have had fun playing with their new Christmas toys:) I can't get enough of these kids :)

Thank you to everyone who has still been checking in on the blog! We DID end up hitting 40,000 hits before the end of 2012!! WOOHOO!!!

Ayla's medicine worked and her cough went away, thank God!! Lil' Chris never caught it, PRAISE THE LORD!!!! He has been cough free!! Everyone here is well, no coughs and no colds...knock on wood;) The flu has been going around like crazy at work. Please pray that none of us get it, esp Lil' Chris. It could put him in the hospital.

We had a FANTASTIC Christmas, New Year, and even got to play in the snow and go sledding!!! I posted pics and video's on fb. One of these days I'll try to find some time to upload some video's on One True Media again:) It's just very time consuming since this laptop is so slow. I've started so many video's, but then gave up b/c I get too frustrated and I don't want to break a window by throwing my laptop thru it;p LOL

Lil' Chris got his ski's that he asked Santa for, and Ayla got her Minnie Mouse dressed in Christmas PJ's that she asked Santa for:) Too funny:) Lil' Chris also got a new 3DS XL and lots of games for it. He LOVES playing it and even tried to sneak it into bed with him Christmas night:) LOL Ayla got a new big girl bed!! She loves it b/c it has a slide and a lil' playhouse underneath:) Now she has a Minnie room:)

They also got their own tablet, so now maybe Mommy can actually touch her iPad;) LOL They both LOVE it!! Ayla calls it a tabalet:) LOL When she wakes up in the morning, she comes quietly into our room and grabs the tablet or iPad off the charger and then either goes in her room or goes downstairs and plays quietly til we all wake up:) She is such a good girl!!

As for a CF Update on Lil' Chris...at the end of December, we went to the CF clinic to get a throat culture to see if the Pseudomonas is still there after doing his first round of TOBI...well, did we have fun on that trip!!! First off, my husband couldn't get that day off, so I had to take the 2 of them all by myself and I HATE driving up there! Second, we were only 10 minutes away and Ayla decided to pee in her pants...yeah...sooooo much fun!!! So of course I have no extra clothes b/c she has been potty trained for over a year! So I call the clinic and tell them I'm going to be late. Then I pull over and search in the GPS(thank God I had a GPS!!) for the nearest Walmart. I start driving and then I see a Kohl's closer than the Walmart, so I go there. 

So after that, we start heading back and the GPS can't find the stinkin clinic!! It kept taking me in circles!! I had just about had it, if you can imagine! Finally I find it and we get there and have the appointment and get his culture. I honestly contemplated just turning around and going home once Ayla peed, but I didn't. It's a good thing, b/c I told the nurse that he has been getting tummy aches and that his stool was oily once. So she called in the dr and she felt his tummy and could feel something. So she upped his enzymes to 4 or 5 instead of 3 every time he eats. He has been on 3 for a long time, maybe since he was 2, so about 3 1/5 years. My husband and I figured that's what they were going to do, we almost just started upping it ourselves. So he now gets 4, but if it's lots of cheese or something, then he gets 5. So far, he has been doing better with that.

So Lil' Chris got his culture by a new guy I think, b/c I had never met him before. Then as we were leaving, we passed some workers in the hallway that had a huge cart of toys and they told the kids to pick whatever toy they wanted:) Their faces lit up!! Ayla got a dr doll and Lil' Chris got a batman toy. They also got coloring books and markers from our fav nurse at the CF clinic, so it turned into a better day after that:)

That is until.....I didn't hear from them about the results and when I called, I find out that they "threw away" his culture!!! I was livid!!! Esp after all we went thru to get there!!! So we had to make another appt to go all the way back up to the cf clinic to get ANOTHER throat culture! I asked again if we could just get it done at his pediatrician, but the nurse said no, that the clinic does it "different"...idk, whatever at this point. 

So we go to the cf clinic on January 2nd and get another throat culture. Of course Nurse P was there and did the culture herself. She came in our lil' tiny room and goes right up in Lil' Chris' face while he is sitting on the table or whatever you call it, and she proceeds to open the stuff to do the throat culture. THEN she goes over to the counter and starts putting her gloves on and says "I'm gonna put a mask on b/c I'm fighting a nasty cold." I about got up and smacked her!! She was JUST in Lil' Chris' face with NO mask and touching the stuff that was going into his MOUTH without gloves!!! I couldn't believe it!! 

So she does the culture, then what does she do....she takes the mask OFF and proceeds to talk to us about how she is calling a meeting b/c they threw away the last one and blah blah blah....Seriously lady??? The room is like 4 x 4 and your gonna stand there SICK and talk to us with our CF son?!?! I was so shocked I couldn't even talk! I just tried to pretend like I was putting his coat on and tried covering his head until she left. I WAS FUMING MAD!!! I told my husband that if he gets sick from her, I was going to let her and the clinic have it!! 

Fortunately he didn't get sick. But I have started a list of all these things to put on the survey that they make us fill out each year. I'll let them have it on there for sure!! And if something like this happens again...I will not hold my tongue!! I will ask to speak to the director pronto!! And can you believe that they didn't even offer to validate parking?? I would've said no, but the offer would've been nice since they made us drive all the way up there for ANOTHER culture b/c THEY threw it out by mistake! So fed up right now!

Now onto even worse news...we finally got his culture result back and unfortunately he cultured Pseudomonas again:( :( :( He will be on Cipro and TOBI again. Not really sure where to go from here, since I got this news on my Voicemail AGAIN!!!! Seriously thinking about switching CF clinics after all of this. I may make some phone calls on my next day off. Honestly...if it's something this important...CALL ME AT WORK!!!! This is 2 times in a row I have found out that he had Pseudomonas from my voicemail!! Unbelievable! So now I have to take my whole 1/2 hour lunch break at work to make phone calls to find out how to get the TOBI, b/c I guess they changed it starting this new year and we can't get it at CVS now. Also, I have lots of questions for the CF Clinic, as you can imagine. If they would've called me back right away today, I could've done this, but now I have to work the next 2 days, so it's going to be hard to get all this done!!! ARGGGGG!!!

Anyways, thanks for letting me vent. This 2nd culture of Pseudo is baffling me. Is it his new school?? I know his teachers are very good about sanitizing his hands often. They even wear the sanitizers on there hip like I do! Is is from the Pulmozyme?? This is something new we started this year, so maybe the Pulmozyme has something to do with it?? IDK. It could be anything I guess. I just pray that this 2nd round of TOBI and Cipro knock it out so he doesn't have to do it every other month.

The weird thing is...he's not even coughing! But I guess that doesn't mean that those bad bacterias aren't still lurking around in his lungs doing bad things. Please pray we figure this out and that it doesn't lead to worse things. His next clinic appt is Feb 20th.

Thanks,
M 

CF Update / Ayla's still coughing :(

Lil' Chris is still doing VERY well!! NO COUGH STILL!!! WOOHOO!!! THANK YOU SOOOO MUCH FOR ALL OF YOUR PRAYERS!!! KEEP THEM COMING!!! I've even gotten him to eat a little bit more!! It helps that I have all their Christmas presents bought and wrapped, so I can bride him to eat more. It's worked so far... he ate 7 chicken nuggets one day, and he ate a small bowl of mac n cheese another day just so he could get a present afterwards!! He NEVER would've touched the mac n cheese if he wasn't going to get a present for doing it;-) LOL Plus, I don't mind giving them early gifts anyways, b/c that way they get played with more, since Christmas day is a little overwhelming with a TON of presents...if you know what I mean:) lol

Ayla still has a nasty cough:( I took her back to the dr's yesterday, b/c she finished the 5 days of Azithromycin and still had a nasty cough. The dr put her on another antibiotic, Augmentin. She doesn't like the taste, but she has to take 5ml 2x a day for 10 days. Praying this will kick her cough out! The dr probably wouldn't have put her on anything, but b/c of the risk of Lil' Chris catching her cough, she decided to go this route. The Azithromycin is supposed to keep working like 5 days after you get done taking it, so hopefully with the combo of these 2 antibiotics, she will get better. The dr. also wants to see if the combination of the Albuterol puffer and the Augmentin will work well together, so she is doing the puffer in the am and pm and when needed. Ayla has a PURPLE spacer/chamber for her puffer:) She likes that! When I gave it to her last night for the first time, she said "Now Chris and I can do our medicine at the same time!" Too cute:)

We are very close to 40,000 hits on this blog!! WOOHOO!!! Can we hit 40,000 by the end of 2012??? Pass this blog along to your friends and family!! We could always use the extra prayers;)

Thanks, and I'll let you know how his dr appt goes on Monday. Praying for NO PSEUDOMONAS!!!
M  
PS. Lil' Chris had a bad night last week. We think it was from some cheese curls he had. The bag didn't say it had Soy Protein, but he was throwing up all night like he normally does when he has Soy Protein:( He missed school that next day, but has been fine since thankfully. 

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:)

1st TOBI Treatment Went GREAT!!

Lil' Chris did GREAT with his first TOBI treatment!! I couldn't have been more proud of him! TOBI is something that I have been dreading for years and all he did was giggle through the whole treatment almost:) LOL Once I figure out how to post video's and pics on here from my iPhone, you'll see what I mean;) I'll post it on fb for now.

He surprisingly didn't say anything about the taste! I did get some good feedback from some fellow CF mommas to have him rinse out his mouth afterwards or to suck on some jolly ranchers or something during treatment to decrease the metal tasting. I could smell it even! It created a lot more mist in the air than I thought it would, def more than the Pulmozyme. It didn't seem to take as long as I thought it would either. I wonder if it's b/c we have a very powerful air compressor. We have the Invacare Moblair 50psi. I think it took like 10 minutes, not too bad. I heard it would be 15-20 min.

In my research, I found a really good site that I thought I would share with everyone...http://www.tobitime.com/index.jsp I esp like the video part(Taking TOBI) that shows you exactly how to administer and clean the nebulizer. Very informative!

I'll be calling the CF clinic tomorrow to get all the details.

Well, I gotta get to bed, 4am is going to come pretty quick! I just wanted to update how his first treatment with TOBI went:)

Thanks for the prayers,
M

Bad CF Update:(

I've wanted to post since Fri, but just haven't had the time...and my laptop is super slow and I can't stand it;) LOL

Anyway, after I posted my last blog post on Fri, I called the CF clinic, b/c I realized I had not heard about his throat culture result yet. So of course...I never get to talk directly to the CF nurse, so I had to leave a message and then I had to go to work a couple hours later for the rest of the night. Wouldn't you know, when I got done working there was a voicemail from a CF nurse saying that we should stop the Omnicef and consider continuing the Flonase(we had stopped this b/c he got a bloody nose and didn't seem to need it anymore), and that she wanted me to call her b/c he cultured "something new" and they would like to treat it and it was "not an emergency". So of course we had to wait ALL weekend til they opened back up on Mon(today). Ummmm really?? That's just not nice to make us worry ALL weekend!! Meanwhile, I get a call from CVS saying that he had a prescription to pick up(it was automated and I just thought that it was old or something).

Today at work was just CRAZY and I totally forgot to call the CF clinic....I know...mother of the year award! LOL Anyway, my favorite CF nurse had luckily left me a voicemail, b/c I worked from 6a-5p so they were closed when I got done work. The voicemail confirmed MY WORST FEAR...he cultured PSEUDOMONAS AERUGINOSA:( You've probably heard me refer to this bacteria before...it's NOT GOOD for CFers!! It's a bad bacteria that is hard to get rid of and I think the only meds to help get rid of it are Tobi and Cayston. So once a CFer becomes immune to those drugs, then things really start to go downhill.

They are putting him on Cipro(white pill) 2 times a day and Tobi (inhaled like his Pulmozyme) 2 times a day. So there actually WAS a prescription at CVS...again...mother of the year award;p LOL  I've heard that Tobi tastes REALLY BAD, so not sure how this is going to go over. I guess we'll find out tonight. First I'm gonna call a fellow CF mom to see what order it needs to be done it. I forget. I think it's Pulmozyme, Tobi, then Vest, but it could be Pulmozyme, Vest, then Tobi??? When he takes the Cipro, he can't have any dairy products with it:( He will be on Cipro for 21 days and on Tobi for 28 days.

I don't know a whole lot about Tobi, but from what I've heard, they usually have to do 28 days on, then 28 days off(so like every other month) until he cultures no Pseudomonas 3 times in a row. Please pray that it works the first time!!

You may be wondering where he got Pseudomonas from?? Well, it's a risk we take every time we take him outside our front door. We try not to let CF rule our life, so we let him go to Kindergarten and we take him with us to go shopping, and we LOVE to go on vacations to Disney or water parks, or anywhere fun:) He LOVES them all! So, he could've picked it up anywhere. Pseudomonas also grows in standing water. You know, my biggest fear about him starting an inhaled med like Pulmozyme, was that we wouldn't sterilize it well enough or something, and he would grow Pseudomonas. Again, still unknown how he got it. It could've been from any of the above OR maybe he was around another CFer and didn't even know it??? Like I said, it's a risk we take every day.

I've tried to put a positive spin on it though for his sake. When I picked up the meds, I said "Wow! Look Bud! You get to do TWO nebulizers now!! It's that AWESOME!! And you get to take a new pill too!! YEA!!" ....if only he knew:( :( :( :(

On top of all of this heartbreaking news....he has a sore throat again:( I REALLY hope and pray he is not getting another cold.

I'll try to keep you updated as best I can. I don't always get on the laptop and for some reason I can't blog from my new phone.

Thanks for your continued prayer...it's especially needed now.
M

CF Clinic Visit 10/24/12

Lil Chris had a great CF clinic visit today! Gained about 1 lb, and 1 inch, and his PFT was 97% even though he has a cough right now! Dr prescribed antibiotic Omnicef and Flonase. Thanks for all the prayers and keep them coming as we await his throat culture results. Also, please pray for adult CFer, Tricia, as she is waiting for a 2nd double lung transplant and is having a very difficult time breathing. Her PFT right now is only 15%:( Lord give her strength!

The above was my facebook quick update, now for a more detailed one;)...
Weight was 46 lbs up from 45 lbs 3 months ago, height was 46 1/4 inches up from 45.5, and BMI was 30th percentile down from 47th percentile(dr's like it to be at least at 50). He didn't grow or gain very much, which is why his BMI went down I guess.

He did great when he got his throat culture!! He even coughed in the middle of it which was good, b/c she was able to get some mucous on the swab thing. I couldn't believe how much was on it! Please pray for no bad bacterias. I'll let you know what his throat culture result was when we get it.

He got his flu shot today and was not very happy about that long needle going in his arm. Pretty much cried and wouldn't move his arm til we went to the park to play. lol Good thing they did it at the end of the visit!

He started a cough last Wednesday, so it had been a whole week and it wasn't going away, and the dr said that his nose was pretty gunked up. I asked if she thought it was allergies or a cold and she said a cold. I pretty much figured that since the rest of the house got sick too. So she put him on an antibiotic called Omnicef. He was on this Sept of 2011. I looked back on his cough chart that I keep on the right side of this blog and was surprised that his last cough was in March! Maybe the Pulmozyme is working!! She also prescribed Flonase nasal spray to help clear up his nose. This is the first time he has ever had this. He has to do 2 sprays in each nostril 2 times a day. He did very well tonight when we gave it to him! I was surprised! Oh, and this is the first time he has had capsules for his Omnicef, usually we get the liquid antibiotics. They are huge, but he swallowed it right down like a champ:)


He did great on his PFT too!! His FVC was 97% and his FEV1 was 92% which was down a little from last time. I thought they were going to be way worse b/c of his cough but they weren't! YEA!!


Right after clinic, I did a CF AiA event today which Kohl's gave a grant of $500 for a Cure for CF!! Woot woot!! Love Kohl's and my awesome associates!!
  Thanks again for your continued prayers, M

1st Time with Strep Throat / Old Videos:)

Well, Lil' Chris got Strep Throat for the first time last week ;( It started Sunday night with a sore throat. Monday morning(9/17/12) at 7:15am, he walked into our room and started throwing up in our doorway...yeah...we thought it was pretty gross too! 

He threw up off and on the whole day and wouldn't eat, saying his throat hurt, his belly, and his head hurt. His fever got up to 100.2 and we gave him kids advil, which helped take down the fever. He would drink water though, which was good so he wouldn't get dehydrated. By the end of the day, he couldn't even sit up to put his pj's on. He was just wiped out! I felt so bad for him, we almost took him to the hospital. 

The next day, he threw up 2 more times, but then started eating a little bit, even though he was still complaining of a sore throat. On day 3, Wednesday, I took him to the pediatrician, b/c he still had a sore throat. The dr right away was like..."Oh yeah! He's got Strep Throat!" I never knew all these other symptom came with Strep...well, now I know for next time. 

He was put on Amoxicillin for 10 days, 2tsp twice a day(he is almost done it now). This is the first time he has been on this. He is usually on stronger stuff. He took one dose that day and when he woke up on Thursday...his throat was all better and he was back to his normal self!! Praise God!! He still had to stay home from school tho, b/c you have to be on the medicine for 24 hours with Strep before returning to school. So he missed 4 days of school that week. 

So that makes a total of 5 days he has missed since school started. Not bad, it could've been worse. I'm just glad he is all better!! His lil' cough seems to have gone away too! So maybe it was a blessing in disguise;-)

So far no one else has caught it in the house, but unfortunately Oma who babysits woke up this morning sick:( Please pray she gets better soon and it doesn't spread anymore!

Here are a couple of old videos that my husband found of the kids playing after Christmas. Lil' Chris was 2 and Ayla was almost 1. It's hard to believe they were that little!! Lil' Chris always loved his guitar!! Ayla shaking her head at the end cracks me up:) Enjoy...

Thanks for your continued prayers,
M

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

THANK YOU, 

THANK YOU, 

THANK YOU!!!!!!

M

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

Annual Chest X-rays and Blood work-almost 5 yrs old

I talked to the CF clinic and we are extending his 5 days to 8 or 9 days of this Azithromycin to finish up the bottle since he still coughs every now and then. It's better, but not gone. They said after an oral antibiotic it should be completely gone, esp since we are going above and beyond with my 7 step treatment plan(check last post;)

Yesterday we took Lil' Chris to the CF clinic to get his annual chest x-ray and blood work done. He did such a GREAT JOB!! He was a little afraid of the needle...he was breathing heavy once he sat on my lap in the chair, but still did great!! After we got the x-rays, I asked if we could get a cd of all his x-rays of the past 4 years and they did it!!! I'll try to figure out how to put them on here if I can. They don't look much different from his first x-ray when he was one, but they aren't very clear either, so not sure what to think. I can't wait til our May 16th appt to ask the dr. I'm going to ask to see the x-ray there so she can go over it with us. They have never done that before, not sure why. I guess I'm gonna have to ask for everything;-) lol

Well, if I'm not on here before Easter, I hope you all have a very happy Easter!! :)
M

Cough Update / 7 Step Treatment 3 times a day to get rid of it hopefully

Well, only a couple days left of his antibiotic and he is STILL COUGHING!!!! AHHHHHHH!!!! So frustrating.

I heard that Azythomycin stays in the system for 10 days even though he is only taking it for 5 days, so I guess we'll wait and see???? I'll prob call the CF Clinic in a few days if his cough isn't gone by then.

The next few pics are of Lil' Chris doing his Albuterol puffer before his 2nd Vest time today and his Acapella after Vest to try to get rid of this nasty cough.
With chamber...
Without chamber...(he likes to do it this way better, and he is pretty good at it too!:)
Holding it in....
I just love his look in this pic;-) LOL
Blooooooooooooooooow!!!
This was him at the end of his treatments after doing...(I may add this pic to the CF commercial;)...

1. 1 Albuterol puff with chamber and taking 10 deep breaths, wait one minute
   
2. then one Albuterol puff without chamber and holding it in
3. then Vest for 30 minutes
4. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
5. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
6. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
7. Then I encourage him to cough it up and spit it out if he can. Today he actually got some up and spit out!! I was so proud of him! I told him he will get a treat every time he does it, hopefully this will encourage him to cough it out more often:)
   

He's been doing these 7 steps morning, noon, and night along with some manual CPT as well(when I'm with him;). Poor thing. I pray it does the trick!

Cystic Fibrosis STINKS, literally sometimes, but overall...it just plain STINKS!!! We need a CURE ASAP!!! It seems like Lil' Chris' CF buddies are having a hard time too lately. Jack & Alli(brother and sister), and Kendall have cultured at least one of the 2 bad bacterias called MRSA and Pseudomonas. Not good. Please keep them in your prayers, and as always keep Phennyman in your prayers too. It's so hard seeing these kids suffer at such young ages.

Thank you soooo much to those who have donated so far!! It means the world to all us CF families!!

Here is the CF commercial my hubby made for the Canton Walk that will play in Massillon. It's the same as the Wooster one, but the walk info is different. We are going to try to get the dates taken off the bottom corners before we send it in;-) lol

If you haven't donated yet and would like to, go to http://www.cff.org/Great_Strides/LilChrisChris6765 and click to donate today! It only takes a minute! If you would rather not pay by credit or debit, you can send me check made out to the Cystic Fibrosis Foundation. If you need my address, just email me, my email address is to the right of the blog.

Thanks everyone for your much needed prayers and keep them coming!!
M

Azithromycin / CF Commercial for 2012

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

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


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

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

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

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

CF Update / CF Lungs vs Healthy Lungs

Just a quick update on Lil' Chris...He finished his 3 weeks of antibiotic, Bactrim, a few weeks ago and for the first couple of days his cough was gone! I was soooo excited!! Then he went back to school and came back home with a cough again;( Ughhhhhhh It was sounding wet, but now it seems to be getting better :) PRAISE THE LORD!!! I'm praying for no more coughs before his next CF clinic appt in May.

I called the CF clinic the other day about getting the nebulizer machine for the Pulmozyme or HTS(we still have not agreed on which one to do). We are going to start it after his next CF clinic appt so they can show us how to use it and clean it properly. They said that some have reactions to it, so they like to do the first treatment at the clinic....which is more than fine with me since I have never used one before. Growing up, me and my sisters were pretty healthy, and the only sicknesses that I can remember were strep throat and my sister had to get tubes in her ears....that's it, other than the common colds!!! Thank You Lord!!!

I know these nebs won't make his cough go away or make him never get another cough again....but it will hopefully help him cough up the mucus and get it out rather than staying in his lungs for more bad bacterias to latch onto it causing more problems. I just pray that he doesn't get any scarring in his lungs before we get a chance to start it. Hopefully this new nebulized med will help keep scarring at bay. If we can keep his lungs clear until a CURE is found...then we are golden! If not, then the scarring and irreversible lung damage will stay with him and affect him even if.....I'm sorry.....WHEN a CURE is found!!!

Here is a pic of a CF kids lungs with irreversible lung damage...you can see how cloudy it looks, that's scarring.
Here is a pic of healthy lungs that are clear...
We are so close to a CURE and we can't let Lil' Chris' lungs get like that first pic! We need that CURE NOW before it's too late!! That's why it's soooo important to donate today to help save not only Lil' Chris' lungs, but all 30,000 in the US and 70,000 children and young adults worldwide!! Click here to donate today!!

Thanks so much to all who have already donated!!! It means the world to us!!!
M

Keep Praying for Chaia / Lil' Chris Update

I can't stop thinking and praying for sweet baby Chaia....

My heart goes out to Shaina and Ben. Why does bad stuff always happen to good people???

Thank you to those who put Chaia's picture as your profile pic on Facebook yesterday:) Ben was right...Facebook never looked so cute:) If you missed it, the pic is above:)

Her big test, PET scan, that was going to be done yesterday got moved to today. Now it's just waiting for the results....sometimes that's the hardest part, other than watching your child suffer. This disease that she has hits a little home for me, especially since it's a genetic disease. Lil' Chris' Cystic Fibrosis is a genetic disease too.

Here is the link to Ben's blog again... www.mustardrevolution.blogspot.com

I also added a link to his blog on my side bar. It is at the top right of this blog below the header pic. You can see if there is a new post, or you can always click that link to get the latest updates on Chaia.

As for Lil' Chris, his antibiotic has been done for a little while now, but he still coughs every now and then. I'm praying it will go away on it's own. He is loving school (other than having to be woken up in the morning;) and he got invited to his first classmate birthday party!! YEA!!! He was very excited, esp since the invite was an Iron Man card...he apparently loves Iron Man right now;-) LOL

Thanks for all the prayers for Chaia and Lil' Chris,
M