Our 2014 CF Commercial that plays on MCTV

Tuesday, April 15, 2014

Canton Great Strides Commercial 2014


Here is the Canton Great Strides Walk commercial my hubby made!! It'll play on MCTV in Massillion until the walk day!! It's on Sat May 3rd at 9am at McKinley High School if you can make it!!

THANK YOU SO MUCH MCTV FOR PLAYING BOTH OUR WOOSTER AND CANTON COMMERCIALS!!! You're the BEST:)

Please share!! Awareness is KEY to a CURE!!!
Thanks,
M

Friday, April 11, 2014

Make A Wish!!!

I was going to blog about the exciting things we are going to have for our walk and to thank those who have donated and signed up to walk with us so far, but....I HAVE SOME EXCITING NEWS TO SHARE!!!!!!!

Lil' Chris has been approved for his wish to be granted from the Make A Wish Foundation!!!! YEA!!!!!!

We are all soooo excited!!!! I know you are probably wondering where we are going, so with no further ado ......DISNEYLAND in California!!!! WOOHOO!!!!!

It's kinda funny, b/c up until the day the Make A Wish volunteers came out to ask what his wish was, he kept saying he wanted to go on a Disney Cruise. Even right before they walked in, he was still saying Disney Cruise, with Disneyland as his 2nd choice. When they asked him what his wish was though, he said Disneyland. Not sure why, but we are glad he made that big decision all by himself. After the shock of him changing his mind, we realized that he made a great choice, b/c he will have much more fun at Disneyland going on all the rides, since that's his favorite thing in the world to do:) Good Job, Buddy!! We are so proud of you!!

All the details still have to be worked out, but we can't wait!!! Of course I will have lots of pics for you all when we get back:) It's not for a few months though, so this is going to be the longest few months ever! LOL

We are VERY thankful for this opportunity that Lil' Chris' CF dr has approved him to be ok enough to go on this trip, and for the Make A Wish Foundation to send us on this trip!!! We couldn't be more happy!

We are so thankful that his health has been good and he is able to enjoy such a great opportunity. It will truly be something he will remember for the rest of his life no matter how long or short it is. Wow, it's hard to type that, as I'm sure it's hard for you to read that, but it's the reality of Cystic Fibrosis. His health could change at any time. We are so thankful that his school has been so good about trying to keep him as healthy as possible, especially through this rough, long winter. THANK YOU Wooster Christian School staff and parents!!! You guys are the BEST!!! They are even doing "Change for CF" to help raise money for a CURE by bringing in their loose change!! Some school families have already signed up to walk too!! We are hoping to have a big WCS team at our walk again like last year:)

I'd like to try and give back to Make A Wish, so I'm going to try and set up some AiA events through Kohl's to help get them some $500 grants from Kohl's. Also, if you would like to give back, here is the link to our Make A Wish chapter to donate...http://oki.wish.org/

Also, here is the link to sign up to walk with us on May 4th or to donate for a CURE for Cystic Fibrosis...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280

Thanks so much everyone!! Please pray that Lil' Chris stays healthy these next few months so we can go on our trip to Disneyland!!!

Thanks,
M
PS. I got lots of good prizes yesterday for our walkers...details coming soon:)

Thursday, March 27, 2014

2014 Great Strides Commercial for our 5th Annual Wooster Walk



Here it is...our 2014 Great Strides Commercial for our 5th Annual Wooster Walk for a CURE for Cystic Fibrosis!!!! It will play on MCTV in Wooster starting in April until the day of the walk on May 4th. So, be on the lookout;)

BIG THANK YOU TO MY WONDERFUL HUSBAND FOR PUTTING THIS ALL TOGETHER ALL BY HIMSELF THIS YEAR, HE EVEN DID THE VOICE!! THANK YOU, HONEY!!!:)

Featured in the commercial are CFers...Lil' Chris, Harrison, Aden, Aubrey, and Sophia.

Harrison will be new to our walk this year...he's such a cutie:) It looks like we may have another new team this year too...McKenna's Maniacs. I haven't met them yet, but I look forward to meeting them at the walk:)

Our goal for the walk this year is a total of $22,000 raised and so far between all the teams, we are at $4,615. Not bad, but we got a long ways to go. So if you know of any businesses that would like to sponsor our walk, please let me know! We have different levels of sponsorship and we will advertise their business at our walk.

Also, our goal is to have 200 walkers and right now we are at 55, so please make sure you sign up today! It's easy to register, just click the team you want to join and then click "join our team" and answer a few questions and make a password. Quick and easy!! Usually I register most of my team for them, but with the new website this year, I found out that I can't. They have to register themselves, but luckily it's not hard and the best part is...whenever I share my team link, someone could donate towards ANY of my walkers!! That's pretty cool!! We can try to share the love:) Remember, if you raise $100 or more, you will get a free CF shirt at the walk:) All you have to do is ask 10 people to donate $10 or 5 people to donate $20!! Simple:)

Here is the link to all the teams, so all you have to do is click on the team you want to donate to or "Join" to walk or help raise money!! http://fightcf.cff.org/site/TR?pg=entry&fr_id=2280

I'll update more about all the fun things we are going to have at the walk soon:)

BIG THANK YOU TO ALL WHO HAVE DONATED OR SIGNED UP TO WALK SO FAR!!! WE ALL GREATLY APPRECIATE THE SUPPORT!!!!
M
PS. I posted the new commercial at the top of the blog also, and it will stay there in case you ever want to watch it again when you check one of my posts;)

2014 Great Strides Commercial Coming Soon

Check back soon
for our new 2014 Great Strides Commercial for our walk for a CURE for Cystic Fibrosis
coming up on Sunday, May 4th at 11am at Ida Sue School Pavilion!!!!
 
Gonna be LOTS of FUN!!!!! Will update more soon!!
 
Please pray for our committee team as we try hard to make the walk a GREAT day:)
 
Thanks,
M

Saturday, March 22, 2014

Thank You!!!!!

Postcards by Vistaprint

My wonderful hubby just ordered this years thank you cards for donations and help with the walk:) I usually don't share them on here, but it's so cute, how could I not;)

If you would like one of these cards, just make a donation on Lil' Chris' Great Strides page or sign up to walk with us for a CURE for Cystic Fibrosis!!! Click this link, it's fast and easy and 100% tax deductible...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280


Big THANK YOU to Kohl's, Barb N, Paul & Kim, Holly S, Stacy W, and Aunt Mar for your donations!!! We GREATLY APPRECIATE EVERY PENNY!!! The researchers are soooo close to a cure and you guys just helped us get closer...can't thank you enough!!! :)

BIG THANK YOU to Dave and Debbie C, Kevin and Jessie, and Deb W. for signing up to walk with us on Sunday May 4th for a CURE for CF!!! Can't wait!! It's going to be so much fun!!!

Our goal is $5,000 and we are currently at $2,110!! WOOHOO!!! This kids classes at Wooster Christian School are doing "Change for CF" to raise money!! YEA!!! Thanks for the support WCS!!!

Thanks Everyone,
M

Tuesday, March 18, 2014

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

Saturday, February 22, 2014

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

Wednesday, January 15, 2014

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:)

Saturday, January 4, 2014

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!!!! :)

Wednesday, January 1, 2014

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!!! :)

Wednesday, December 25, 2013

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

Friday, October 25, 2013

1st Visit from the Tooth Fairy!!!

Guess who lost his first tooth at 6 years old???



He was sooo excited that the tooth fairy was coming, that he couldn't fall asleep!! :) LOL  Is it weird that Mommy couldn't sleep either just anticipating the look on his face when he found out the tooth fairy had come?!? LOL

Luckily his most recent favorite movie is The Tooth Fairy with The Rock:) He's been watching it over and over and over...I guess anticipating when HE was going to get a visit from the tooth fairy;) Lucky for us, on the movie the kid only got $1 from the tooth fairy, so when I asked Lil' Chris what he thought he was going to get, he said $1. I wasn't sure how much it should be these days, so I was glad for the movie;) LOL

Now the tooth next to that one is loose and also one of his top front teeth is loose too!! Looks like he may be asking Santa for his 2 front teeth this year;p LOL
M

Saturday, October 12, 2013

1st Grade Field Trip to Ramseyer Farms

 Cool tunnels to run thru and peak through the bubble:)
 Cool new slides:)
 Lil' Chris doing flips, and Ayla getting buried in the corn:)
 Lil' Chris' turn to get buried:)
 Lil' Chris' Wooster Christian School 1st Grade class
As you can see in the pics, the kids had a BLAST at his 1st grade field trip to Ramseyer Farms!! He has a great bunch of classmates this year:) I look forward to getting to know them and their parents better:)


Friday, October 11, 2013

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

Friday, October 4, 2013

New Vest and Travel Neb!!!!!

 Guess who got too big for his blue Vest?? He now is in a Child Large!! I can't believe it!!!!
He is shooting with his Army Gun. LOL
 This looks like a school pic :) LOL
  He said he wanted the "Army Vest" b/c Spencer goes to the Army:) I think he learned to pose from Spencer too;p LOL

 New travel nebulizer. We are renting it to see if we like it...we'll probably end up buying it. It's pretty cool and he likes that he can walk around during treatment time:) 1st time ever not being tied down during treatment time!! (he started the neb before putting the Vest on to test out his freedom;)
Here are some pics of him using the travel neb, disposable neb cups, and his Army Vest on vacation to DisneyWorld...:)
 Ayla wanted a pic too;)
 He liked putting his arm thru the tubing;p
I def recommend using disposable neb cups when on vacation!! They were soooo nice!! They came individually packed, we used them, and then just threw them away!! Soooo easy!! We didn't have to worry about how we were going to sterilize them and dry them. We will def be using those on every vacation going forward!!!


http://mustardrevolution.blogspot.com/2013/09/2-years-ago.html  Remember baby Chaia from 2 years ago when I posted about her and her rare genetic heart disease?? Well, guess what?? She is still fighting like a champ!! Check her blog to see her cute lil' face:)

More Disney pics coming soon:)
M

Friday, September 20, 2013

Annual CF Clinic Visit Result 9/18/13 6 yrs old


Lil' Chris had a GREAT annual CF clinic visit the other day!! He gained some weight and a whole inch!! He was so proud that he didn't have any tears or even get teary eyed for either his throat culture OR his Flu Shot!!! He couldn't wait to tell his little sister, esp since she was rubbing it in that she only got teary eyed for her last shot;p LOL!!!

His PFT's were good too. Since he is 6 now, he started a new kind of PFT that he will only do on his annual visits that includes doing an inhaled Albuterol treatment, then different types of PFT's. He did VERY well!! He picked up on what to do after being told only once! He would go thru the motions before she would even tell him what to do! I was impressed!!!




New PFT with the door closed and she would use a microphone to tell him what to do.

His doctor said his lungs sounded GREAT!! YEA!!! This was the first year that we did not need to do Chest X-rays. He will do them every other year now. He does need to get blood work done before the end of the year though and each year:( He did not like hearing that...luckily for him I had to go to work;p We were there for 4 HOURS as it was:(

Just for my records,...
On 5/8/13 his height, weight, BMI, and PFT's were...48", 47.8 lbs, 33%, 84/79.
On 9/18/13 his height, weight, BMI, and PFT's were...49", 51.8 lbs, 44%, 94/82!!! He is in the 90th percentile for height and the 75th percentile for weight!! WOOHOO for BIG improvements!!!

Please pray with us that his culture comes back "normal" again! The last 2 have been normal, so praying for that again...and every time:) I'll keep you posted.

He has been doing GREAT health wise!!! He had a cold 3 weeks ago, but it did not turn into a nasty cough like it used to, so we are going on 8 months with NO ANTIBIOTICS!!!YEA!!!!!

His next check up is on 1/8/14
M

Friday, August 23, 2013

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

Friday, July 19, 2013

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!!

Friday, July 12, 2013

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:(

Sunday, June 30, 2013

Disney 2012 Vaca Photo Book

Check out this Photo Book we made by Shutterfly of our 2012 Disney Vacation...(better late than never, right??) LOL

Click here to view this photo book larger

Shutterfly photo books are the new way to preserve your memories. Create your own today.

Saturday, June 29, 2013

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
video
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.
video

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

Friday, June 14, 2013

Community Garage Sale/CF Bake Sale Sat 6/15 8a-3p

Our Annual Community Garage Sale is Sat June 15th from 8a-3p!!!! If you want the address, please email me at lilcmom@gmail.com. 100% of everything we sell at our house is going towards a CURE for Cystic Fibrosis and our neighborhood is doing a Bake Sale/Goodies for CF!!! Some houses will have baked goodies, others will have hot dogs or chips or drinks, etc... We are trying something a little different this year instead of everyone just doing baked goods:)

Last year we all raised $400!!! I wonder if we can reach $500 this year???

The other day, we got a visitor from a lady that lives up the road in an elderly home. She is in a wheelchair and remembers us from our Garage Sale last year, and remembered about us raising money for Cystic Fibrosis for our son. She said that she is having her own sale and that she wants 100% to go towards a CURE for CF!! Isn't that the nicest thing ever!!! Her name is Barb and will be visiting us at our garage sale too. I can't wait to thank her for her generosity and for thinking of us:)

This is why we do the community bake sale for CF...not JUST to raise money, but to spread the word about Cystic Fibrosis!! One in 31 Americans is a symptomless carrier of CF, just like my husband and I. Two carriers together have a one in four chance that each child will have Cystic Fibrosis. Lil' Chris was our 1 in 4 chance. Luckily Ayla was not born with CF.

So, spread the word about CF neighbors!! The best website is cff.org!!

BIG THANK YOU TO ALL OUR NEIGHBORS AND BARB WHO ARE HELPING US GET ONE STEP CLOSER TO "A CURE 4 LIL' CHRIS!!"
M
PS. Lil' Chris is doing great and can't wait for his cousins to come from NJ tomorrow for the whole week:) Also, we are so happy that Sarah, 10 year old CF girl, was able to get her new lungs!! It's been all over the news and I am so proud of her mom for doing everything she could to save her daughter by petitioning for her to get lungs even though she is under the age limit.

Monday, June 3, 2013

Fun Weekend Project!!

Here it is....
 Lil' Chris and Ayla helping:)
 This is just steps 2-12 out of 35 steps of wood with their bags of screws and nails(lots of prep work)
 My sheet to organize each step;) LOL
 Our AWESOME neighbor, Sean, was a HUGE HELP!! THANK YOU SEAN!!
 Lil' Chris helping:)
 Lil' Chris helping get the roof started:)
 Ayla is on the 2nd floor, and the Chris' are on the 3rd floor;) lol
 One roof is up!! It's so cool that Chris and I can stand up straight on the 2nd floor:)
 Chillin while Daddy and Sean put on the 2nd roof:)
 About to put on the swing part!!! YEA!!
 Playing while Daddy puts the picnic table together:)
 Ayla swinging while Lil' Chris was at his last day of JKindergarten. She was happy to have it all to herself:)
 They go pretty high! Their heads go above the 3rd floor!! This is their favorite part...the yellow swing;) LOL
 Having their 1st picnic at their new picnic table:) It's kinda nice in the shade behind the rock wall and slide!
 Spying on me with their telescope, and Ayla driving the ship with the wheel!!
They couldn't be happier:) The smiles on their faces every time they play on it, makes it all worth it:)