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:)

Last CF Fundraiser of 2012 / CF Update

Join us this Saturday Dec 1st between 10a-6p(the pic above says 1-6, but it's actually 10-6:) at Deborah's Garden Market to benefit Cystic Fibrosis!!!

Thirty-One, Arbonne, BeautiControl, Scentsy, Tastefully Simple, Wildtree, and Paparazzi Jewelry will all be there and have a raffle for Cystic Fibrosis!!!

See you there!! I will be there from 10-1 for a Kohl's AiA event! If we get 5 associates to volunteer, this will put us at $5,000 raised from Kohl's for this year alone!!! WOOHOO!! I still need 3 more associates to sign up, so please pray they come so we get the $500 Kohl's grant!!

As for a CF Update...Lil' Chris is doing well and just finished his Cipro and only has 4 more days of TOBI left...and he is NOT coughing!! Woo Hoo!! He had no problems with either one...PRAISE GOD!! I will be calling the CF clinic tomorrow to schedule an appointment to get another throat culture to see if the Pseudomonas is gone. I will let you know. Pray that the meds worked and he has a normal culture result!! 

Thanks for your continued prayers,

M  

HAPPY THANKSGIVING!!!

Just wanted to say 

HAPPY THANKSGIVING EVERYONE!!!

There is much that I am thankful for, so I thought I would list some;)...

1. I am sooooo thankful for a God that hears our prayers and answers them!
2. Thankful that even though Lil' Chris cultured Psuedomonas, he is still very active and happy and doesn't let it bother him!
3. I'm thankful for a "healthy" year for Lil' Chris even though he started new meds this year, including his first ever nebulizers...Pulmozyme and TOBI.
4. So thankful that Lil' Chris takes so well to swallowing all his pills, to doing all his nebs, and to doing his Vest EVERY DAY without much complaint!
5. Thankful that he has Ayla to play with and keep him active;-)
6. I'm thankful to celebrate Thanksgiving with my in-laws....which means I gotta get off of here and go celebrate, so HAPPY THANKSGIVING!!!!

M

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

1st TOBI Treatment Went GREAT!!

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

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

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

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

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

Thanks for the prayers,
M

Bad CF Update:(

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

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

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

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

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

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

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

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

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

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

CF 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

CF Clinic Visit 10/24/12

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

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

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

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

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


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


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

CF Update / Prayers Needed!!

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

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

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

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

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

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

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

1300 HOURS on the Vest

He hit the 1300 HOUR mark on his Vest a month or so ago. I had taken a pic of it, but it was one of the ones that got erased on my phone. Here is a pic from the other day at 1335 hours. 

Can you imagine your kid sitting still for that many hours from age 1-5 years old?? I give Lil' Chris a lot of credit for all he has to do on a daily basis. 

He's such a good kid 

and hardly ever complains!!

As for a CF Update, he is doing great!! Keep the prayers coming daily, they are working!! :) He has his next CF clinic visit on 10/24, so pray he continues to stay healthy and his next throat culture is normal!

Thanks,

M

1st Time with Strep Throat / Old Videos:)

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

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

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

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

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

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

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

Thanks for your continued prayers,
M

1st Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
M

Thirty-One CF Fundraiser Results

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

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

Danielle

Chantel

Jeanette & friend:)

Andrea S

Stacy W

Samantha C(fellow CF mom:)

Rachel M

Barb N

Stacie M

Amanda P

Samantha S

Margo F

Donna H

Steph W

Sue D

Rebecca G

Melissa C(fellow CF mom:) 

Carrie G

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

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

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

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

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

CF Clinic Visit / Thirty-One & Alice Noble Fundraiser Results

Had a GREAT CF clinic visit yesterday, and a GREAT Thirty-One Party for CF last night!! We have raised $700 so far and are still taking orders until Fri 7/27!! The pic above are just a couple of items available. BIG THANK YOU to Carrie Guenther my consultant, who did a wonderful job and is donating 25%(her commission) to a CURE for CF!! Another BIG THANK YOU to all my awesome girls for coming to my party and ordering something!!...

Stacie M

Margo

Amanda

Samantha S

Barb

Rachel M

Oma

Samantha C

Andrea S

HUGE THANK YOU to my Kohl's girls in red above for coming so that Kohl's will give a grant of $500 that will go towards a CURE for Cystic Fibrosis for Lil' Chris and ALL who suffer from CF!! To break it down, $500(Kohl's grant) + $200(25% commission on $800 ordered)=$700!! Click here if you would like to order too and help us get to $1,000 by Friday 7/27!!!! 

Every girls gotta have a Thirty-One bag;-) I'm super excited to get mine!!! You can even personalize it with a saying like "Cure CF" or your name or something for only $5!! Also, for every $31 you spend, you get one of 5 bags for only $5!! The bags you get for $5 are really nice too!! If you are interested, just let me know!

Thank you to Samantha for bringing Makayla so that Lil' Chris and Ayla had someone to play with:) Also, it was so nice talking with Samantha and sharing my tips and tricks of having an infant with CF. Her 4 month old daughter was recently diagnosed with CF. Please keep Aubrey and the whole family in prayer as they get used to this new way of life. Also, Aubrey has cultured Pseudomonas already and is on Tobi and Cipro which is hard for a little one to sit and do those treatments.

Special thanks to my neighbor Stacy W for ordering on-line even though she couldn't make the party! Thanks Stacy!!

Thank you to Jeanette and Steph W for spreading the word and getting orders!! You girls ROCK!!

So our goal is to hit $1,000 raised by Friday 7/27, so make your orders and spread the word!!

As for Lil' Chris' clinic visit...his weight was 45 lbs(73 percentile) up from 43.8 lbs, height was 45.5 inches(88th percentile) up from 45, and his BMI was 47% up from 40!! WOOHOO!!! I'm so glad he has started eating a little bit more. He will now eat a grilled cheese sandwich, turkey and cheese sandwiches, and nuggets!! Just the other day when I was giving him a bath, for the first time I noticed that his belly is actually starting to stick out a little bit!! WOOHOO!!! Gaining weight is so important to CFers. 

His PFT test went GREAT!! He blew a 99 FEV and a 93 FEV1!! She kept saying what a great job he was doing for his age! I love his face in the video's above after he got done:) He was so impressed with himself, I think:) I know I sure was proud of him!! Way to Go Lil' Chris!!

Overall, the CF doctor told us that we are doing a GREAT job as parents and to keep doing whatever we are doing b/c it's working! She also said that ....

"Lil' Chris is our poster child for CF"

WHAT???? WOW!!! I LOVE hearing that!! I pray he continues to do so well! He wouldn't be doing so well if it wasn't for all your prayers!! I can't thank you all enough for continually praying for Lil' Chris!! It means the world to us!! God CAN work miracles, and he is every day in Lil' Chris!!

I'd say pray for a clear throat culture result, but he didn't get one this time. I'm not too worried about it since he just got one 2 months ago and he hasn't had a cough since!! Praise the Lord!!

The kids behaved so well for the 2 hours that we were there!! When they weren't looking out the window at the baseball field with Daddy, they were playing with the iPad or reading books that we brought from the library:) Love my kids!!

We had another CF Fundraiser today at the Alice Noble Ice Arena! BIG THANK YOU to my awesome Kohl's associates for coming so that Kohl's will give another $500 grant to cure CF!!...

Marla

Steph W

Sarah D

Devin

That's $1200 in just 2 DAYS for a CURE for Cystic Fibrosis!! WOOHOO!! We did a CF craft at the Summer camp at Alice Noble today, which was learning about CF and then putting CF tattoos on. Above is a pic of the kids being goofy with their shirts and shorts. Some of them even put the tattoo on their forehead. LOL! Then there is a pic of Lil' Chris being silly with one of the toys:) LOL

Thanks, 

M

PS. I'll update you on our total from the Thirty-One party after Friday when it closes:)

Thirty-One Party for Cystic Fibrosis 7/25/12 at 7pm

Ok everyone, I'm having my first ever Thirty-One party to benefit the Cystic Fibrosis Foundation to help find a CURE for CF!! Who wants to help me raise some much needed money to find a CURE and also get some pretty cool hand bags for yourself?? ;-)


Everywhere I go, I always see someone carrying a Thirty-One bag! I've been told by many that "You're not cool, unless you have a Thirty-One bag!" So I've teamed up with my awesome neighbor, Carrie G, to host a party at my house this coming Wed 7/25 at 7pm(message me or email me for address if you want to come). I can't wait! This is the first party that I've ever hosted! I think I went a little overboard on buying stuff for the party;p I got all kinds of different chips, cookies, pretzels, and soda:-)  Well...I DO have a CFer in my house, so....Yes, everything is high calorie, sorry :p LOL


Feel free to pass this along to get more orders and to get more money for the CFF!! You can order no matter where you live!! You don't have to be here for the party to order something! Just click this link and make your order and 25% will automatically go towards CF!!  http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E1971734&from=MYEVENTS


BIG THANK YOU to Jeanette for being the first to order and to get her friends to order too!! Thanks Jeanette, you're the BEST!!!


Another BIG THANK YOU to my 2 sisters and my neighbor Andrea for ordering as well!! We are almost at $250 already and we didn't even have the party yet!! That's AWESOME!!! 


Thanks everyone for helping support Cystic Fibrosis!! It really means a lot!!


Before the party this Wed, Lil' Chris has his 3 month check-up at the CF clinic. Please pray that his PFT's are up and that his culture is normal and that his lungs are clear! He has been doing really well and hasn't been coughing hardly at all!! Praise the Lord!! I think the Pulmozyme is doing it's thing;-)


Thanks,
M

Pulmozmye Update, 4th of July Pics/Video's, and Swing Flip

Lil' Chris is doing GREAT with this new nebulizer routine!!  He doesn't mind it at all, and on day 2, he actually asked to do more afterwards;-) I told him it's only one time a day and he got a lil' sad. What a kid! He takes any new thing the dr.'s throw at him SO well!! He AMAZES ME!!

I, on the other hand, am still getting used to it. I'm surprised I haven't forgotten yet since we have been so set in our ways doing the Vest in the morning. It really helps having the nebulizer machine right next to the Vest machine, b/c I've caught myself about to put his Vest on and then I see the nebulizer and I go and get the Pulmozyme out of the fridge real quick;-)

So, I'm still learning a lot thru this whole new process and luckily I have a GREAT CF community to help me out with all my silly lil' questions. CysticLife.org is so great to have around in times like these...

1. We are supposed to wash it afterwards with a clean paper towel and soap and warm water, THEN sterilize them after each use. Oops, didn't do that the first time, we just rinsed them.
2. You can't pour the Pulmozyme in the cup and then let it sit on the counter...it leaks :b Learned that the hard way!
3. Boiling water is HOT!!! I about burned my fingers trying to fish them out of the water after it was in the microwave for 6 minutes and I even let it sit for a couple of min before I tried to get them out!! OUCH!!
4. Lastly, it's hard to tell when the medicine is done. I try to shake it towards the end and then more comes out, but still it's hard to tell and I hate to waste any esp since it's outrageously expensive! Thank the Lord for BCMH!! Please pray we never lose BCMH!

I hope you all had a Happy and Safe 4th of July!! We had a great time at the pool and BBQ at Oma and Opa's house with John, Andrea, and Kennadie!! Afterwards, we went to the soccer fields where we have our CF walk every year, and they had some special things going on, and one was the kids got to sit in some army vehicles and got to turn them on, honk the horn, and step on the gas!! They LOVED it!! They kept asking where their buddy Spencer was and if he drives these :-) I think they are going to have lots of questions for Spencer when he returns home from the army in a month or so;)

Here is a pic of the kids about to watch the Children's Hospital Helicopter, "Air Bear", take off. They liked exploring inside of it, while I secretly prayed they would never have to use it!!

Here is a video of the kids watching the helicopter fly off. It takes a while, but at the end they pray with me that they never have to go in one of these. Too cute...and sad knowing that it's a possibility for Lil' Chris someday:(

After that was fireworks time!! They covered their ears until half way thru, but then they put their hands down and realized it wasn't so bad after all;-)

Well, Lil' Chris continues to do GREAT!!! He is having no side effects from the Pulmozyme and I think he is coughing less too now that I think about it:) YEA!! Right now, he is having fun playing outside on his swing set:) 

On Tuesday, we went looking for a nice new swing set since he loves playing on his tiny old hand me down one, but my goodness they are expensive!! The one we want is white plastic over wood, so then we don't have to worry about splinters, or any mold or rotting or having to stain it each year, but it's like $4,000!!! YIKES!!! Of course it had to have a lil' playhouse which Ayla LOVED, b/c it had windows and a door:) She kept going in it and wanted us to knock to come into "her house"...too cute!! Oh well, maybe some day. On second thought...we might need one sooner rather than later, b/c he just almost flipped the whole swing set by swinging too high, and he just taught himself how to do flips, which is ok, but I'm afraid he might hit his head, and he loves hanging from the top...I guess there's not much else to do with it. LOL I think he needs a twirly tube slide, a rock wall, a rope wall, a horse swing thing, and a much taller, faster slide! He would be in Heaven!...and so would Mommy knowing it's much safer :) lol

Here is a video of Lil' Chris trying to make the best of his swing set(which we are very grateful for, otherwise they would have had nothing all these years, he's just outgrown it now;) and of course him doing a flip!! He was so excited the first time he did it!! I just can't believe he taught himself and he didn't hit his head! Still scares me!

Thanks for checking in with us and please keep your prayers coming!!

M

PS. Remember baby Chaia?? Well she just turned 1 the other day!! Amazing what prayer can do! Thank you all for praying for her, she still needs it as she has a long road ahead of her. Also, please pray for some fellow CF friends...Phennyman and Tricia. Phoenix had surgery the other day and is still in the hospital, and Tricia is going thru so much right now, she has an infection in her sinuses and she continues to loose weight and her breathing difficulties are increasing. Her husband, Nate, keeps a blog about her(which is what got me to start this blog so many years ago;)...www.cfhusband.blogspot.com. Please keep their families in prayer too. Thanks.

1st Nebulizer...Pulmozyme Video

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The above video is of Lil' Chris doing his very first nebulizer treatment!! Not bad for being a 5 year old CFer!! Most CFers start within their first year it seems like! He still doesn't even seem like he needs it, but from what I've gathered, it will only help him in the long run.

His first inhaled med is called Pulmozyme. It's purpose is to thin the mucus. People with Cystic Fibrosis produce very thick, sticky mucus that clogs the lungs and other organs making it harder to breathe. Pulmozyme helps thin the mucus, then the Vest helps clear the mucus out. After his Pulmozyme this morning, we did his vest about 20 minutes after, and I tried to get him to cough after the Vest, but it didn't seem to do much. I guess I was expecting a wet sounding cough that would produce mucus, but it was just dry. Not sure if this is a good sign or not.

I have always been a little scared of nubulizers with Lil' Chris, b/c I know it's very important to keep them sterile. If we don't sterilize them properly, then bad bacterias could build up on it and that would NOT be good for Lil' Chris. We were told to do it right after each use, b/c otherwise the medicine will build up on it and it will be hard to scrub it off. We rinsed it with hot water, then put all the pieces in a bowl and microwaved them for 5 minutes right after his treatment. Then when done, we shook the excess water off and let them air dry on a paper towel. We can not rinse them off with tap water, b/c that would defeat the whole purpose. I've been told that we could use a baby bottle cleaner, so I may have to pick one of those up;-)

This is all a new experience for us, so any insight would be much appreciated!! :)

Lil' Chris is doing GREAT!! He doesn't cough that much, but when he does, it is dry so that is VERY good!! A couple of weeks ago, he was waking up in the morning with lots of build up in his nose, but once he would blow a few times, he was fine. He complained of a sore throat a couple of days, and it got me worried he was getting a cold, but I guess it was just allergies. Thank the Lord!!

Right now, he is living it up having a blast on his Summer vacation, esp the last 4 weeks with his cousins!! Adding the Pulmozyme now will help him get into a routine for when Kindergarten starts this Fall. We decided to start the Pulmozyme this week, b/c I have off work this week and thought it would be good for me to be there with him for the first week so he can get used to it.

On another note...after my vacation this week, I will be going back to work on Mon 7/9 as an Assistant Store Manager of the Wooster Kohl's!!! WOO HOO!! I've finally been promoted AND within the same store!! I can't wait to get started, but this relaxing week with my loves will be so nice:) Thank you so much to all who were praying for this promotion and for me to get to stay at the same location. It really means a lot to me to get to stay so close to Lil' Chris and my family. Family time is so precious to me...to any family with a family member with a terminal illness. I'm just so glad I have the BEST DM EVER to promote me within the same store!! That almost never happens! THANK YOU JASON!!! THANK YOU LORD FOR ANSWERING MY PRAYERS!!

Have a GREAT week, I know me and the kids will...and Daddy when he has off work;-) lol
M

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M