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

Bactrim Update / CVS

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

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

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

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

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

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

1st Grade and JK!!

I can't believe Lil' Chris and Ayla are both going to school now!! Lil' Chris is in 1st Grade and Ayla is in Junior Kindergarten. Time sure does fly!!!

They started on Tues 8/20/13 and they are both LOVING Wooster Christian School!! Ayla has the same teachers that Lil' Chris had last year, which is wonderful b/c they already know to be germ cautious even with Ayla, b/c she could bring home germs to Lil' Chris. Lil' Chris loves his new teacher and classmates! He's already asking for a play date with one of them:) He said "Micah's my best friend!" :)

 Here is Ayla's outfit that she picked out all by herself...Kohl's of course;)

Lil' Chris goes 9-3:30 and Ayla goes 9-12. Lil' Chris gets to take the bus in the afternoon which he LOVES!!! This was the first time he ever rode a bus all by himself...my lil' boy is getting soooo big;(

 
His new teacher has been very receptive to everything I have told her a bout being germ cautious. She even put a hand sanitizer in her recess bag, and he has a small one in his desk! She said she will move his desk if someone close to him is coughing or is sick just like they did last year. It seemed to work pretty good last year! He only had 2 colds during the school year, and after the first one it unfortunately turned into a bad cough which turned into our worst nightmare...Pseudomonas:( But, he did the harsh treatments of Cipro and TOBI and we were successful in eradicating it after a few months!!! He has cultured "Normal" since then!! His next CF clinic apt is on 9/18, so I am curious to see what his culture result will be. I'm praying it continues to be Normal and no Pseudomonas!! Pseudomonas is a VERY VERY dangerous bacteria to have in his lungs.

The Administrator has been super helpful in setting up his 504 plan again this year. We only had to add one thing to it b/c he will be eating lunch there this year. Since calories and keeping his weight up is soooo important for CFers, I asked that he be monitored and pushed a little to make sure he eats. So far so good! The first day he came home and said "Mom, I ate my WHOLE sandwich...even the crust!!" :) YEA!!! I'm trying to figure out how to get more calories into his lunchbox...this is all new, so still figuring things out;) I'm thinking maybe buying something that won't spill so I can put his whole milk or scandishake(600 cal drink) in it. I'll figure something out.

I'm also getting with the Administrator to send a letter out to the parents of both their classes to inform them what CF is, that it's not contagious, and to ask if they could please keep their child home if possible when they are sick, or to let the teacher know in the morning so that she can keep them separated. This is HUGE HUGE HUGE and very important for Lil' Chris' health, b/c just the common cold could put him in the hospital!!

The kids are selling Eagle Cards as a fundraiser for school, so if anyone lives in the Wooster area and would like to buy one, just let me know! They are only $10 and have many different great deals on them!! One of them being a buy one public skate admission and get one free at Alice Noble Ice Arena. That's where I do most of my CF fundraisers!!! I'm proud to say that a few of the others on the card have helped out with CF in one way or another too!! Here are some of them...
Domino's Pizza(they donated all our pizza for our walk the past 2 years:)-buy one pizza and get one free
Auntie Anne's-buy 2 pretzels and get one free
Buffalo Wild Wings-buy a sandwich and get one free
The Faithful Little Cupcake(they did a CF fundraiser last year:)-buy a coffee and get a free cupcake
Hartzler's Ice Cream-buy one small ice cream and get one free
OH-YO Frozen Yogurt-buy one and get one free up to 10oz
Omahoma Bob's BBQ(they did a give away at our CF walk:)-buy one dinner and get one free
Wayne Lanes-buy one game and get one free
Wendy's-buy one combo meal and get one free (you get your money back right here, b/c one combo meal is like $7 and you can do it up to 4 times, so you spend $10 on the card and can get potentially $28 worth of food for free!!:)
There are others too, and some you can do up to 4 times and others are 2 times each, and others are unlimited amount of times, like Domino's!!! :) The best part is, that you have a whole year before it expires!! Let me know if you are interested, b/c we only have until 9/19 to sell them!! Last year we personally used 2 cards!! The Wendy's alone was worth it!! :) 

BIG THANK YOU to 5 of our neighbors who bought them already!! It really is a great deal! The kids were soooo excited to go around and sell them! I was surprised that they were not shy about it at all!! LOL We did half the neighborhood the other day, and we will do the other half tonight or another night:)

As for a CF update...Lil' Chris is doing GREAT!!! He got something new that is kinda cool...but I'll save that for my next post;P

Please pray they both have a great, happy, HEALTHY school year!!!!
Thanks,
M
PS. It's kinda nice having time to blog again:) lol

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!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 / Prayers Needed!!

Thought I'd give a quick CF Update. Lil' Chris is doing GREAT!!! No coughs right now, which is FANTASTIC!!! But, this morning at breakfast, he was complaining of his throat hurting and his forehead hurting. It hasn't slowed him down though, but he wouldn't eat his toast and lots of butter:( I'm hoping and praying it doesn't turn into anything.

He has regular CF clinic check-ups every 3 months, and his next one is scheduled for 10/24. Please pray his lungs are clear, his throat culture is normal, and he does great on his PFT test.

As for the Pulmozyme, he is still doing a GREAT JOB with it!! We do this nebulizer every morning at the start of his Vest. It only takes about 5 minutes, since we have a very powerful machine:) The sterilizing isn't as bad as I thought it was going to be. We wash each piece with soap and water and then put them in a bowl of hot water and put it in the microwave for 6 minutes. Then we take them out and place them on a paper towel to air dry and we put a paper towel over it too.  The only thing is....we sometimes forget it in the microwave and it sits there for awhile, then we have to re-do it. LOL

Remember when I posted about a little girl named Chaia who had heart problems and a rare genetic disease? Well, can you believe it has been 1 year and she is doing Great?! She still has a long road ahead of her, but she is def a fighter! Please keep her in your prayers as well. 

Phennyman could still use your prayers as well. Poor lil' guy has been going in and out of the hospital too much! :(

Tricia, Nate's wife who has CF, has been having a very hard time breathing lately. She is about to get on the list for a 2nd double lung transplant soon, I believe. Please keep her and her family in prayer. Lil' Gwyneth is doing Great, but I'm sure it isn't easy seeing her mommy suffer.

Thanks for all your prayers!
M
PS. I FINALLY got my new iPhone 5, but I haven't figured out how to post pics on here yet from it. As soon as I do though, I'll post the pics and video's from Lil' Chris' first basketball practice. Guess who his coach is?? :)

Thirty-One CF Fundraiser Results

Hopefully this posts, I've tried like 20 times to post it and have had to re-type it 2 times! ARG!!! Sorry it took so long to post, but here are the results...

WE REACHED OUR GOAL FOR THE THIRTY-ONE Fundraiser for CF!!! WOOHOO!!! THANK YOU EVERYONE WHO ORDERED SOMETHING TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!!...

Danielle

Chantel

Jeanette & friend:)

Andrea S

Stacy W

Samantha C(fellow CF mom:)

Rachel M

Barb N

Stacie M

Amanda P

Samantha S

Margo F

Donna H

Steph W

Sue D

Rebecca G

Melissa C(fellow CF mom:) 

Carrie G

I can't begin to put into words what it means for all these girls to support Lil' Chris like this!!! It means soooooo much!! BIG THANK YOU to Carrie for donating her whole commission for A Cure 4 Lil' Chris and ALL CFers!!! You're the BEST Carrie!!! :)

Our goal was to have $1,000 worth of products ordered so that we could raise $250 plus the $500 from the Kohl's team for helping out at the fundraiser, which equals to $750 raised for a CURE for Cystic Fibrosis!!! WE DID IT!!! WOO HOO!!!!!!  

We have surpassed my personal goal of $5,000 now for our walk for CF!!! We are at $5,673.90!!! Woo Hoo!!!
We have even passed our team goal of $7,000 too!!! It doesn't show it on my Great Strides page yet, but we are still waiting on about $2,000 to come from Kohl's grants from my CF fundraisers! Kohl's alone has donated $4,000 so far this year!!!! AMAZING!! My goal was $5,000 like last year, so I better set up 2 more AiA events;-) We couldn't raise that much if it wasn't for my awesome Kohl's employees!! They are the BEST!!!! 

Here are some pics of the kids modeling our new Thirty-One bags. They LOVED their bags!! Ayla said "That's A for me!!!" LOL(I got her initial on one of the bags for her;)

Thank you again everyone!! I'll probably do another Thirty-One fundraiser for CF next year, or when people start asking me to do one b/c they want to order some stuff;-) I already know one friend who wants to order some more:)
M
 PS. If you missed NY Med about the 26 year old girl with CF, click this link to watch the episode(it shows other people too, but you might be able to fast forward through them if you don't want to watch them too)...http://nymedshow.com/episodes/episode-6

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.

Vest Bear Arrived!!!! Woo Hoo!!!

BIG THANK YOU TO TRACI LIBERTO, a fellow CF mom, who told me about a cool Vest Bear Buddy that Hill Rom Vest company was giving out to lil' CFers!!! All I had to do was call Hill Rom and ask for one and they were on back order when I called, but we just received it the other day!!! WOOHOO!! 

Lil' Chris LOVES it, even though he won't admit it all the time!!! It wears a Vest just like him!!! AND you can even pump it up and inflate it's Vest!!! It's pretty cool! It has velcro straps just like Lil' Chris' Vest too!!! Somebody was pretty smart when they invented this bear to help lil' ones to do their Vest treatments:) The best part is that it fits on all bears or stuffed animals or dolls that size!!! Ayla likes it on her bear :)


I asked Lil' Chris what he wanted to name the bear and he said "Chris!" I wonder why?!? :) My guess is b/c he can relate to it :(


Enjoy the video of him putting his Vest on and the bears Vest on and then doing the Vest treatment together and then taking the Vests off together. At the end is a lil' glimpse of when he doesn't want to do his Vest sometimes. He's usually pretty good about it, but he does have his moments!! It's just heartbreaking, but Mommy can't give in, b/c it's important for him to stay as healthy as possible!!! WE NEED A CURE NOW!!! Please take 2 minutes and donate today, just click the "great strides" link on the top right of this blog. Our walk is only 2 weeks from today!!!! YEA!!!

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

M

PS. Preschool Graduation pics coming soon! :) DON'T FORGET TO JOIN US THIS TUES MAY 29TH BETWEEN 5-8P AT THE WOOSTER CICI'S PIZZA FOR A CURE 4 LIL' CHRIS AND ALL WHO SUFFER FROM CF!! RAFFLE IS FOR 2 TICKETS TO AN INDIANS GAME OF YOUR CHOICE!! SEE YOU THERE!!!

"Change for CF" Results and Party

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

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

Being silly picking up Ayla

Pizza Party Time!!

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

He did eat his pretzels though :)

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

Group pic with all the change that they raised!!

Goody bag for the kids as a THANK YOU!!

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

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

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

 

WE LOVE YOU MS. CARRIE!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

THANK YOU, 

THANK YOU, 

THANK YOU!!!!!!

M

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