CF Update-Cold and Cough:(

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

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

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

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

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

Thanks everyone,
M

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

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

Thanks for all your continued prayers,

M

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

MERRY CHRISTMAS!!!!

I hope everyone had a very Merry Christmas!!! We had the BEST Christmas EVER!!! The kids were very entertaining, and I took pics and video until my phone couldn't take anymore:p LOL

Lil' Chris got the drums that he asked for and Ayla got her green Polly Pocket helicopter that she asked Santa for:) She was even soooo happy, that she cried tears of joy when she opened it!!! It was so adorable that it made me cry:)

As I reflect on the day, I'm feeling very blessed to have such a wonderful, happy, "healthy" family!! There are many CF families who spend holidays in the hospital very ill, but Lil' Chris has had a GREAT year until he got a cough and stuffy nose this past Friday. It has gotten worse each day, but we are doing extra Vest and Albuterol treatments to help get rid of it. He recently got a new Vest machine which is really good, b/c it pauses every so many minutes to help him learn to cough in between. This new feature has been very helpful since he got this cough. He has his next CF clinic apt on Jan 8th, so I'm really hoping and praying that he doesn't culture Pseudomonas or something worse.

I wanted to share some good news that a fellow CFer, Piper Beatty, got the call for her 2nd double lung transplant today!! It's a Christmas Miracle!! So happy for her and her family! They are in my thoughts and prayers, as well as the donor family. Please pray everything goes smoothly and she has a quick recovery.

I know it's been a while since I posted last, but you might be seeing me post more often now that my awesome hubby got me a new touchscreen laptop for Christmas!! WOOHOO!!! I LOVE IT!!!! THANKS SO MUCH HONEY!!!!!

MERRY CHRISTMAS EVERYONE!!!
M

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

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

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

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

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

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

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

Thanks,
M

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!!

Cough/cold update

For an update on the kids colds and coughs...

Both of their colds/allergies seem to be gone. YEA for no more sniffles!!!

As for their coughs, they seem to be gone too!!!! YEA!!!! I think it mainly stopped before the 4th of July, not sure of exact date;) Praise God that our treatment plan worked and Lil Chris' cough didn't get worse and turn into something bad. Anytime he has a cough and doesn't need an antibiotic is good, because he could build up a resistance to the antibiotic, and some of the harsher antibiotics could have serious side effects.

Just because he stopped coughing doesn't mean that some bad bacteria isn't lurking deep down in his lungs. The last time he cultured Pseudomonas he didn't have a cough at all. His next CF clinic appointment isn't for a little while, so we are praying that this cough(even though it went away without antibiotics) didn't produce anything.

Please pray that his next culture comes back normal like the last 2!!!!
Thanks,
M
PS. Sorry for no pic, I tried to post a pic of the 2 of them doing treatments together, but either blogger isn't working properly, or it's my crappy laptop. IDK:( Getting frustrated, but I really don't want to get rid of this blog. It helps me keep track of everything, but I really miss putting pics and videos on here all the time:(

Summer Vaca Fun / Cough:(

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

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

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

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

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

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

CF Clicic Visit 5/8/13 5 yrs old

Thanks Aunt D for making these AWESOME CF shirts...

...esp with our website on the back;p

Pic of Lil' Chris doing his PFT(Pulmonary Function Test)

Lil' Chris' last CF clinic visit on 5/8/13 went GREAT!! His weight 3 months ago was 46 lbs 9oz and this time it was 47lbs 8oz, his height was 47" and is now 48", his PFT was 96/90 and this time it was 84/79(not good). So, he gained 1 lb and 1 inch, but PFT's were down. At that time of the visit, he had a tiny productive cough every now and then(probably why his PFT were down), but we think it was from his stuffy nose from his allergies. His doctor started him on Claritin once a day for allergies, and his cough has gone away, but his nose is still stuffy in the morning. He got a throat culture and they got the results back to me in just 2 days for once!! :) LOL 

The culture result was....

....drum roll please....

"NORMAL!!!" 

WOOHOO!! That's 2 times in a row now!!! AMAZING!! Thank you soooo much to everyone who has been praying for no Pseudomonas or any bad bacteria's!! We GREATLY APPRECIATE IT!!!! 

His last day of Junior Kindergarten is on 5/29 and I'm soooo happy to say that even though he cultured Pseudomonas 2 times during the school year....he still has not had a hospital stay yet!!! YEA!! We have a lot to be thankful for!! 

I have many more things to post, but we have a big weekend planned, so I won't be able to get to it til next week. Be on the lookout for some pics of our big weekend though;) 

Thanks again for your prayers not only for Lil' Chris, but also for Tricia(adult CFer). She had her 31st birthday and then got her new lungs and is doing well. This is her 2nd double lung transplant. Praise God the lungs came just in time!! Please keep the donor family in your prayers as well. 

ARE YOU AN ORGAN DONOR??? I SURE AM!!! :)

M

4th Annual Great Strides Walk was a SUCCESS!!!

Our big 4th Annual Great Strides Walk for Cystic Fibrosis was this past Sunday and it was AMAZING!! We had about 150+ walkers and raised about $20,000 dollars!!! WOOHOO!!!!

Our first year we only had about 50 walkers and only raised about $5,000...I'm so happy how our walk has grown and multiplied!! The more walkers=more money raised=the closer we are to a CURE!!! :) 

Our first year, everyone was able to stand under the pavilion and I would just stand on a table to talk, but this year there were so many walkers, that the only thing that would work was the loud speaker from the Ambulance:) And then Officer Cruz was nice enough to start the walk off with his siren! That was pretty cool! Maybe next year I'll see if Lil' Chris can push the button, that would be neat:)

This year was the first year I had to do all the announcements and everything, b/c Nate from the foundation had to go to another walk. I didn't mind doing it, but I felt bad that I wasn't more prepared. I got up there and completely went blank on a lot of our sponsors:( Next year I will def make a list and be sure to mention all of our sponsors!! So... since I can't go back in time and add them to what I said...I'll just mention them now on my blog(please feel free to share this blog post;) lol....

BIG THANK YOU TO OUR SPONSORS...
Panera Bread donated 100 yummy bagels. THANKS JESSICA!!!
Domino's on Burbank donated 25 yummy pizza's. THANKS VIC!!!!
McDonald's on Burbank donated 30 cheese burgers and french fries. THANKS LINDA and CHRISTIE!!!
Kohl's in New Philly, Medina, and Wooster=$1,500 for the day of the walk!!! WOOHOO!! By Sept, Kohl's will have donated about $7,000 total, and that's just OUR team, not all over the country!! Gotta love Kohl's!!!! If you don't shop Kohl's now.....you gotta start!! They raise millions for Cystic Fibrosis!!!
Wooster Christian School team had 8 different families that were there supporting Lil' Chris:) THANKS EVERYONE!!!
Preferred Wireless Sprint in Wooster
Verizon Wireless on Milltown Rd in Wooster
Wayne Savings Community Bank in Wooster
Starmark Farm in Wooster
General Building Maintance Corp. 
An anonymous $250 sponsor
The Faithful Little Cupcake
Feikert Concrete
Uncle Jim's Pepper Mustard
Pat Catan's
MCTV
Akron Aeros
Buehler's
Wooster Fire Dept
Wooster Police Dept
Samaritan Care Ambulance
Dr. Dave and his AMAZING balloon animals:)
Carrie G-Thirty-One
Stephanie W.-Arbonne
Lu Ann Miller
Phyllis and Reed Seiberling
Tim and Jessica Corbett
Kathi Bond

Overall, we had a BEAUTIFUL day for our walk, a little windy when I was trying to tape down all the prizes and when we all were trying to put up our canopies, but still a gorgeous day!! 

BIG THANK YOU to my fellow CF moms Samantha, Denna, and Alma for all their help!! Denna made little goody bags for all the kids, and made BEAUTIFUL signs for all the CF kids so the walkers could read a little bit about who they were walking for and why. Samantha got LOTS of prizes and I'm happy to say that I actually ran out of raffle tickets!!! That's the first time EVER!!! I still had stuff to give away, but there were no more names in the bucket!! WOW!!! That's awesome!! Thank you Alma and team for all the yummy cookies!!

BIG THANK YOU to Nate for bringing and setting everything all up, and to everyone else who helped out in setting up too...my husband, Spencer, Oma, Opa, Jessie, and Kevin!! I was so thankful that Kevin volunteered to take pictures with his awesome camera this year!! THANK YOU KEVIN, you're the BEST!!! I will post the pictures when I get them:)

THANK YOU to our CFers who we walked for...Lil' Chris, Daniel, Jack, Aden, Sophia, and Aubrey!! You guys did a GREAT JOB wearing your Hawaiian leis the whole time and staying away from each other, because of the risk of cross contamination!! So proud of you all!!

SPECIAL THANK YOU to all who walked for "A Cure 4 Lil' Chris!!" I would name you all, but there were so many, about 80!! That's AWESOME!!!;) We had lots of family, friends, co-workers, neighbors, and  classmates!! I'm sorry I didn't get to go around and talk more with you all. You all brought tears to my eyes with how many showed up just for Lil' Chris!! We can't thank you all enough for giving up a Sunday to walk, and for all your generous donations!! 

BIG THANK YOU to my sister and her kids for driving all the way from NC to walk for Lil' Chris:) We had so much fun at the walk, at Put-in-Bay, and Acres of Fun mini golf!! Can't wait to see you guys again!!

Thanks again everyone who walked, donated, or sponsored our walk!! It sure was a SUCCESS!!! More pictures coming soon!!! :)
M
PS. Update on Lil' Chris' CF clinic visit this last Wednesday coming soon!!

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

 Eeeeek, is it Pseudo AGAIN????

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

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

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

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

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

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

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

2/20/13 CF Clinic Visit / Fundraisers

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

 3 month check-up, 5 1/2 yrs old

 PFT(Pulmonary Function Test)

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

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

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

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

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

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

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

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

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

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

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

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

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