Cough Update

Sorry it's been awhile, but I've been busy fundraising and organizing for our upcoming walk for CF on May 4th. This is our 5th annual walk!! I can't believe how time flies! Seems like yesterday I made the call to the CF Foundation to get a walk started here in our town since all the other walks are kinda far:)

I'll update you more on the walk later, but for now I'll fill you in on lil Chris...My last post was when he had that bad cough and we thought he was going to have to get an antibiotic for it...we'll, I'm happy to say that his cough went away on its own and I didn't even need to call the clinic!!! YEA!!!! I was so relieved!! He's has been doing great since!! Thank you all sooooo much for all your prayers!!! God definitely heard our prayers and answered them!!

Well, I gotta get back to fundraising... I'm in the process of writing a letter to the kids classes about joining us for our walk and raising money for A CURE 4 Lil' Chris;)

Keep checking back for some exciting news coming soon:)
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

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!!!! :)

Cough Update

Lil' Chris started 14 days of 3tsp 2x a day of Bactrim on Sunday 12/29/13 for his wet cough. This is the first antibiotic since last January when he was on Tobi and Cipro for Pseudomonas!!!! Praise the Lord he has had an AMAZING year despite having cultured Pseudomonas last Nov and Jan!!!! This is only his 4th cough in 2013. Not bad!! The other coughs weren't bad and went away without antibiotics, but this one kept getting worse, so I felt he needed a little help of an antibiotic. Luckily the medicine is working great and his cough has gotten much better!!

We are going to use his next cf clinic apt as a follow apt for this cough and antibiotic. It's on Jan 8th, so please pray for normal throat culture, good weight gain, and good PFT's!!!!

I hope everyone has a HAPPY, HEALTHY NEW YEAR!!!!! I'm praying 2014 is the year for a CURE for CF!!!! They are sooooo close!!! I'll be starting my fundraising soon to get to that CURE sooner!!! :)

Thanks,
M
PS. I LOVE my new laptop, honey!!! Thanks so much!!! :)

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

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

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

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

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

 AMAZING!!! THANK YOU JESUS!!!!

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

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

drum roll please..... 

NORMAL!!!!

WOOHOO!!! 

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

 M

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

Lil' Chris is doing very well on the TOBI and Cipro!! Praise the Lord!! He has no cough at all...not even a TOBI cough yet! Please continue to pray that these meds work to get rid of the Pseudomonas.

Alya's sore throat is all better! YEA!! Unfortunately my husband's nose has been running, so praying that the kids and I don't catch his cold and that it's just allergies or something.

Please pray for Tricia, adult CFer, who has had a rough time lately. Also pray for little Aubrey who has caught the bug going around.

I can't believe Ayla's 4th birthday is on Tuesday!!! Where has the time gone?!? I let her pick our her cake today. She chose Tangled. We have been watching that movie a lot lately;) She doesn't even have any Tangled toys and that's not what I got her for her birthday, but that's what she wanted for her cake:) LOL!!

 HAPPY EARLY BIRTHDAY, AYLA!!!

WE LOVE YOU!!! 

Thanks,
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. 

CF Update / Ayla has a cough:(

Lil' Chris is still doing great! No cough! His nose is a lil' stuffy, but NO COUGH!! YEA!! 

Ayla, on the other hand, has a HORRIBLE cough right now:( She is on Azithromycin and the dr gave her a ProAir puffer like Lil' Chris for an as needed basis. So far, she hasn't needed it. She had a fever there for a couple of days, but seems to be getting back to herself now...other than the cough not going away:( 

Please pray that Lil' Chris doesn't catch her cough, and that Ayla's cough goes away soon!!! He goes for another throat culture one week from today to see if the Pseudomonas is still there. Pray that it's not!!

I really like how we switched his Pulmozyme neb to nighttime! It makes the morning go by soooo much easier, esp before school!!!! But I'm glad we originally started it in the morning, b/c it made doing the TOBI in the morning not so bad, b/c we were already used to doing a neb in the morning:)

Hope you are all doing well!! Thanks for all the prayers!!
M  
PS. My toe is almost completely healed!! Thank God I had that surgery/procedure, b/c I got like instant relief!! That was the most painful thing ever!! Taught me a lesson though...never get distracted while cutting your toenails and slip and cut too far on the corner! Even though I could see the corner of the nail, the dr said that somehow some part of the nail was puncturing my skin, which was causing the discomfort. I pray it never does that again!! Best part is, you can't even tell I had the surgery!! :)

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:)

Kiddos Update:)

Lil' Chris is still doing GREAT with his TOBI and Cipro!! So proud of him!! He is still coughing a lil', but not like a cold cough, so that's good:) We have switched to doing his Pulmozyme at night now instead of the morning and it seems to be working out okay so far!!

We took Ayla to the doctors yesterday for her cough and stuffy nose that she has had for like 2 weeks(her cough went away for a few days, but then it came back), and she got her first throat culture taken and she didn't even cry!!! GO AYLA!! She didn't cry when she got her flu shot the other day either!! Lil' Chris cried like a baby when he got his and he's 5 and Ayla is only 3!! ;-) LOL I think she was determined to beat her big brother. She said after he got his shot that she wasn't going to cry when she got hers...and she didn't!! She came close, but the tears did not come out! I felt bad for her, b/c you could tell it hurt her and she really wanted to cry:( She's one determined lady though! Just like her momma;)

So today, I got a voicemail from her dr saying that she did not culture Pseudomonas like Lil' Chris, but she DID culture Strep Throat! ARGGGG!! So now she is taking Azithromycin 5ml once a day for 10 days. We were kinda shocked she cultured this, b/c she's been acting fine and has not complained of a sore throat and has just had a cough, except one day she had a lil' fever for a few hours.

Please pray she gets better soon and that it doesn't spread to the rest of us, esp Lil' Chris...he's got enough going on right now.

The kids are soooo excited that their cousins are coming next week for Thanksgiving!!! Only thing is...Lil' Chris has cultured Pseudomonas, Ayla has cultured Strep, and their cousin Nathan has Leukemia. I'm a little worried that they may get Nathan sick, which could turn out very bad for him. So, I sent a message to the CF clinic to see what they think, maybe the meds will work by then??? IDK, we'll see what they say.

Totally bummed that the CiCi's Pizza here in town closed a couple weeks ago:( That's where I did most of my CF fundraisers. Luckily the Alice Noble Ice Arena lets me do CF Education Days there during their after school program. I'm still able to make that an AiA event with Kohl's to get the $500 grant, so that's good!! When one door closes, another one opens:) I thank God that they allow us to do events there, b/c otherwise I wouldn't be able to raise $5,000 from Kohl's each year...btw, just one more event for this year and Kohl's will have donated $5,000 to CF this year alone!!! THANK YOU AWESOME KOHL'S ASSOCIATES!! Last year they did $5,000 too!! I can't remember exactly how much the years before that...a few thousand, I think:) Gotta love Kohl's!!! Speaking of which...I have a Friend's and Family coupon for 20% off starting this Thursday!! If you want me to email it to you, just send me a message or an email:)

Thanks so much for your continued prayers!
M

TOBI and Cipro Update

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

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

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

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

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

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

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

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

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

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

CF Update / Pray for Tricia

Thanks so much for all the prayers everyone! 

Lil' Chris is doing MUCH better!! His cough is gone and his nose isn't stuffy anymore!! 

Praise the Lord!!

He still has a lot of pills left for the Omnicef and alot of the flonase left. We've stopped the flonase, but are continuing the Omnicef. Usually when we get the liquid antibiotic it is only for 14 days, but this pill form was for 21 days. I'm just VERY thankful that his cough is gone. 

Ayla's cough is gone too! Her's was kinda bad too. We all got that cold, but are all better now! YEA!! 

I had a procedure done on my toe this past Monday, and it is doing much better so far!! After 1 1/2 months of excruciating pain, I was ready to do anything to make it go away. Unfortunately, I had to stop running everyday, but.....before I had to stop to let my toe heal.....I reached my goal of running every single day for 2 whole years straight!!! WOO HOO!! I missed 4 days b/c the dr said to rest my toe, and I missed one day b/c I had a stomachache and was waiting for it to go away, but then I accidentally fell asleep;) LOL Oh well, not bad for only missing 5 days in 2 years(other than vacations where I didn't have my treadmill;)

Please continue to pray for Lil' Chris. Also please keep Tricia in your prayers still. Her husband Nate said that the dr's told her how close she is to dying. This just breaks my heart! She was the first CFer I knew. I followed Nate's blog religiously... www.cfhusband.blogspot.com. She and Nate were why I started this blog. Pray she gains weight and strength to be listed for a 2nd double lung transplant. I think the reason I connected with her the most, was b/c of her love for the Lord. She always gave praise to God even at her worst times. I admire her sooooo much!! 

WE LOVE YOU TRICIA!!!

Thanks,

M