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

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

CF Clicic Visit 5/8/13 5 yrs old

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

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

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

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

The culture result was....

....drum roll please....

"NORMAL!!!" 

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

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

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

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

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

M

TOBI/Cipro Update & Reading!!!

Lil' Chris finished his Cipro the other day and only has a couple more days of TOBI left! YEA!!!!!

He still is doing GREAT and doesn't even have a cough or anything!! You would never know by looking at him that he has some bad bacterias deep down in his lungs just looking to cause some major trouble.

It was rough this 2nd time around with the TOBI, b/c for some reason it took longer to administer than the last time he was on it. I looked back on my blog, and on 11/10/12, I blogged that it only took 13-15 minutes for the TOBI, but this time around it has been taking like 25 minutes! That's a big difference for a little kid! Even Lil' Chris started complaining by saying, "I don't want to do TOBI, b/c it takes too long!" Poor kid. I think it might have been b/c Nurse P sent us the wrong neb cup. It was the same, but it came with a different mouth piece(one to attach to the mask, which we don't use), so we took the mouth piece from the last one and used that. We washed the old neb cup a couple times, but it still had that hard residue on it that wouldn't come off down in the bottom:( I guess we didn't wash it well the last time we used it...prob b/c we were thinking we would never have to use it again...wishful thinking I guess. Oh well, lesson learned.

He has a cf clinic apt on 2/20 where he will get his 3 month check-up and another throat culture to see if the Pseudomonas is still there. If so, then we will do TOBI every other month, but not Cipro. Praying for no Pseudo or anything worse!!!

On a good note...he has been doing really well with learning to read!! I've been working with him the last few days and he can now read 30 words!!! Tonight he read most of a book to me at bedtime! I was soooo proud of him!! I made flash cards with site words on them. We started out with 10 words the first day, and then we have been adding 10 more words each day! He's doing really well! His incentive...a freeze pop:) This kid is easy:) LOL We are praying he will get to move onto 1st grade next year and not have to go to all day Kindergarten. Right now he is in 1/2 day Kindergarten. 

We might be able to skip Preschool for Ayla, b/c she can identify all the letters, colors, shapes, and has been reading words too, b/c she has been watching me teach Lil' Chris!! We even play games as to who can find the word the fastest! I love it!! They are both so competitive and this helps keep Lil' Chris focused:) Ayla is very bright for her age...she knows the order of the rainbow(I didn't even learn that til I worked retail and had to learn to merchandise LOL:), and can tell you who's birthday is next..."Forst, it's my birfday, then Mommy's, then Chris', then Daddy's!" is what she says:) She just needs to learn to talk right. She says "f" for "th" and "o or y" for "L" and a couple other that I can't think of right now, b/c it's late;) If you ask her to spell her name it sounds like "Ayoa", but she says "yike" instead of "like". LOL I've been trying to work with her on that, but she gets frustrated and angry when I correct her. Oh, and she skips the number 13 when counting, and when I asked her why, she said that she can't say it, she just gets embarrassed...poor thing. It's a work in progress, she'll get there.

Thanks for all your prayers,
M
PS. Please keep Tricia(adult CFer) in your prayers as she was not able to get listed yet for a double lung transplant that she desperately needs.  Also please pray for Stacy A. from my work with Bronchiectasis, which is like CF. She hasn't been feeling her best and had to get a Picc today:( Get well soon, Stacy!!

CF Update

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

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

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

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

 HAPPY EARLY BIRTHDAY, AYLA!!!

WE LOVE YOU!!! 

Thanks,
M 

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?? :)

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

Pulmozyme Decision / New Prevacid Capsule

After much thought, research, and prayer, our decision is in about the Pulmozyme....kinda;) LOL

This past Monday, I had to call the CF clinic b/c they left me a voicemail that he could no longer get the Solutab Prevacid that he has been on for years. So, now he is on the capsule Prevacid. They are just like his enzymes except bigger and a different color. He takes one 15ml capsule each morning. He's such a trooper that he can take all 3 enzymes AND prevacid all at once with a drink!!!! If you look in the pic below, you can see the aqua color capsule next to his enzymes. I took this pic for his 2012 Great Strides Video(see at top of blog:) Won't you please donate today?? :)

Ok, back to that phone call... when I called the CF clinic, I asked for my fav nurse and I was sooooo glad she was there!!! After we got the Prevacid thing settled, I started asking her about the Pulmozyme. She told me all about it and gave me a website to look up with videos. Its just Pulmozyme.com. I looked it up and right away was very encouraged b/c I saw 3 fellow adult CFers that I knew...Ronnie and his wife Mandi Sharp from Run Sick Boy Run CF blog and who founded CysticLife.org...Emily Schaller the founder of Let's Rock CF and the "You Know" You Tube videos which are Ellen Degeneres-like shows about CF(they are AWESOME), and Isabel Stenzel Byrnes who has a twin sister with CF too and they wrote a book about CF called "The Power of Two" I can't wait to get my hands on it and read it, b/c those girls are Amazing!!! Also, Isabel told me that her movie should be coming to OH soon!!! YEA!!! So, needless to say, when I saw the CFers that I knew, I felt very comforted!! When I started watching the videos, I realized that I had already watched them before at some point! I watch lots of videos that people post, just in case I will need that info for Lil' Chris. I especially liked the "How Pulmozyme Works" video.

Alright, back to my call again...I WILL get to our decision eventually;-) LOL As I was talking to my fav nurse, she was telling me that Pulomozyme is more like a preventative medicine. It will help keep his mucus thinner so he can cough it up and out easier. She mentioned that Pulmozyme has been around for 15-16 years and it usually increases the FEV1. She went on to tell me that they usually start this around 5 years old and are on it for life. Now, I always knew that more treatments would eventually get added, b/c I know so many CFers around the world, esp adult CFers that do 3-4 hour treatments every morning and night...but I guess I was thinking it would happen later on since he is doing so well, not in just a few months!! YIKES!!! She said it's not very effective if it is used just when he has a cough. They have seen better results in long term use. This med may prevent a lung infection, a hospital stay or many, and will hopefully help his cough get better b/c it will make him cough more to get it out.

I asked her about HTS or Hypertonic Saline which is very similar and I know a lot of CFers on it, some even do both Pulmozyme and HTS! HTS has only been around for the last 5-6 years. It does not have to be refrigerated like Pulmozyme does, and it is more natural. HTS is also cheaper. It draws more water into the airways and makes it easier to cough out the mucus. Pulmozyme is approved my FDA and works to thin mucus so people can cough it out easier. Fortunately, it looks like our insurances will cover it...THANK YOU LORD, b/c Pulmozyme is $2,000 for a 30 day supply!!!

CFF.org has some great info on both, so click these links or any of the color links above to learn more...
Pulmozyme-http://www.cff.org/treatments/Therapies/Respiratory/Pulmozyme/
HTS-http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

So, as I was talking to the nurse, I was telling her about my rough experience at my last visit. (BTW, thank to my fellow CF moms who helped me get through that rough time by sharing your stories with me:) She apologized and offered to get a second opinion from another doctor, who is the director of our CF clinic as well. He suggested one more week of Bactrim to see if his cough will clear up completely(he has one more day left and he isn't coughing, but when I ask him to cough, you can still hear that it is a little bit wet). He also didn't think that Lil' Chris needed to go on the Pulmozyme right away. He suggested that we do some research on it, and come back to our next visit in 3 months with all the questions we have about Pulmozyme and HTS and ask our doctor. His next visit is on May 16th and I've already got a list started...I LOVE the list app on my phone;)

Since talking to this nice nurse, it's seems as though if we want to keep Lil' Chris "healthy", then we are going to have to start one of these chronic medications soon. He will continue his Vest as usual and will do this new treatment either before or during his Vest either in the morning or at night. I can't believe he has been on his Vest for over 1,100 HOURS!!! My husband and I have a BIG decision as to which one to go with. I'm kinda thinking Pulmozyme, and Chris is kinda thinking HTS. Which one is better in the long run...that is the big question!?!?

Chris and I were trying to decide whether to start him on it in May, or wait til his next appointment in August, when he'll be 5 years old, since it has only been tested in 5 year olds and up. Actually, the CF Foundation recommends it in 6 year olds and up, but if we wait too long, he could possible get irreversible lung damage....we DEF don't want that!!! I say we start it in May, that way he will have a couple of months to get used to it and get into a routine before he starts Kindergarten in August....YIKES KINDERGARTEN!!!! That's a whole nother story;-) LOL

Although it is disheartening to add one more chronic treatment to his daily life at such a young age....this is NOT the end!!! There are new drugs in the pipeline that are tackling the basic defect of CF. I've talked about them before, but we are getting closer and closer now! Kalydeco (previously known as VX-770) is a new oral medication that was approved by the FDA on January 31, 2012 for people with CF ages 6 and older with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. Although this won't help Lil' Chris yet, b/c his CF genes are Double Delta F508, doesn't mean that there is no hope. They are doing test now on DDF508 patients to figure out a way to get it to work for them too:) They say possibly within the next 5-10 years!!! THIS COULD BE THE CURE THAT WE HAVE BEEN PRAYING FOR AND RAISING MONEY FOR!!!!!

So what does this mean?? We need to keep praying and keep raising money so they can do their research and GET US THAT CURE!!!! This past weekend was my birthday weekend and I decided that the best present possible, would be donations for A CURE for Lil' Chris and all with CF!! So, many many many thanks to Nancy & Al, my Aunt Mar, my Dad, Mandi W, and Melissa V for all donating in honor of my birthday and it truly was my BEST birthday EVER...not b/c we went skiing or went to see Monster Jam(that was pretty cool seeing the big trucks up close tho;)...it was the $440 donated by you guys that is going to help save my son's life some day!!!!!!

So PLEASE CONSIDER DONATING TODAY EVERY SECOND COUNTS...click this link http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks for being so patient with me in our decision on Pulmozyme and keep praying for a CURE!
M
PS. His throat culture results was Staph Areus sensitive to Oxycillin(MSSA) his usual, so YEA FOR NO NEW BAD BACTERIAS!!!! PRAISE THE LORD!!!

1st PFT Video / CF Update

Lil' Chris' CF clinic visit went VERY well!! His appt was Wed 8/24/11 and he did his very first PFT!!!! I was soooooo proud of him!!! We were told that he wouldn't do these Pulmonary Function Tests until he turned 5 or 6, but I guess they thought he could handle it now?!?! Either that or it was just an excuse to get him out of the room so that they could ask me questions about his eating habits and such. I'll admit...I was VERY disappointed I did not get to go with him to do his first PFT;( I tried to, I told them I wanted to take pics, but they said they wanted to talk to me not my husband. Oh well, there is always next time, since he will be doing this test EVERY CF clinic visit for the REST OF HIS LIFE, which is every 3 months.

Anyway, while he was doing his PFT, I was talking with a specialist. She asked me lots of questions about what he eats and what he does when we try new foods with him(spits it out). She said to encourage him to eat more and try new foods, we should praise him and give him a reward or something. I told her we already do that. That was basically all it was. I don't think I needed to miss his PFT for something I already knew. Oh well!!

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

You know....I always dreaded him having to do a PFT, but it wasn't so bad! He seemed to really have fun with it, since they have kid games associated with it. He had to blow up the hot air balloon, roll the ball in bowling, and blow out the candles on the computer screen, all just by breathing out really really hard and long! In the video, you can kinda see the computer screen and Lil' Chris blowing, but it got cut off a little when I uploaded it, sorry:( He kept stopping and taking a breath, but he still blew a 83%! Not too bad for his first time! Hopefully next time will be 100% or more:) Also, PFT's always worried me b/c of the possible cross-contamination, since every CFer in that clinic puts their mouth on it, but my husband said that they put a new mouth piece on for every patient, and the nose piece is always a new one too! Lil' Chris liked playing with the nose squeezer thingy afterwards;-) LOL

Since Lil' Chris did such a good job and didn't cry or anything when they did the throat culture, we took him to play mini golf!! Does anyone recognize the shirts Lil' Chris and I were wearing?? We got them from Josh at "Welcome to Joshland." Thanks Josh for the Awesome shirts, and Awesome CF blog, and Awesome videos that teach lil' kids about Cystic Fibrosis!!! (Click on that last blue line and you can watch Moganko do a PFT:) Lil' Chris LOVES watching his videos, b/c they contain a puppet to make it fun, named Moganko!! Plus, Josh is pretty hilarious too:)

His last CF Clinic visit was 5/18/11 (3 months ago) ......

Weight was 38 lbs. 6 oz .........now it is 38 lbs. 8 oz :( wish it was more, but dr. didn't seem like it was so bad since he keeps getting taller.

Height was 42 inches .........now it is 42 3/4

BMI was 47 % .................now it is 44% again, the dr. said this was still good since he keeps getting taller.

I was hoping for better results, but I guess I won't worry too much if the dr. isn't too worried about it. I'm still going to try to feed him as much as possible and get as many calories in him as I can. I asked the dr. if there is a certain amount of calories he should be eating every day, but she didn't really give me certain number. She asked what he was eating and then said to switch fruit snacks for snack to oreo's or another high calorie snack. By doing this, it could add a couple hundred calories per week, but he LOVES fruit snacks and isn't a big fan of oreo's, he does love chips though!

I just emailed the clinic to find out what his throat culture was, b/c he has been coughing quite a bit the last couple of days. Last night he had a hard time falling asleep b/c he kept coughing and coughing, poor thing;( It's kind of a mix between a dry and wet cough. I would say more dry than wet. He was complaining his chest hurt. To help him stop coughing so he could sleep, I gave him 2 puffs of Albuterol and a drink, and did some manual CPT. Today is definitely going to be a 3-4 times a day for his Vest!! I'm praying he didn't catch any bad bacterias. He's only been in preschool for 2 weeks!!! I wonder if he's going to make it the whole year without having to be put on a daily nebulizer treatment?!?! It's not looking so good;(

Thanks to Mary, local fellow CF mom, I went and bought an alcohol free hand sanitizer which is what they use at her CF son's school. She said that the kids use it every time they enter or leave their classroom. His teacher said that it cut down on the number of colds throughout the year, which is GREAT when you have a CFer in the class!! So Mary told me where I could find it, and I went and bought some for Lil' Chris' classroom. It comes with a MSD paper(I think that's what it is called) which basically says it's legal to have in the classroom if a health inspector comes in. His teacher was very receptive to it!! I haven't had a chance to ask her how much they have been using it though. I'll try to remember next time:)

Last night he woke up in the middle of the night throwing up a few times too. Not sure what from yet. My husband thinks maybe from all the coughing earlier, but he was throwing up like he ate some soy protein, which he is allergic to. I would say the hardest thing about Preschool is that I have no clue what he eats for snack! So I'm not sure if he was throwing up from something he ate at preschool or not. I'll have to start hanging around afterwards so that I can ask what they ate for snack, I guess.

Please pray his forceful cough goes away soon and that he won't need an antibiotic!
Thanks,
M

Why I Fundraise / CF Update / CiCi's CF Fundraiser Results

My last CF fundraiser at CiCi's Pizza went VERY WELL!!! It was a FANTASTIC night and a lot of fun!! We raffled off 2 tickets to an Indians game of your choice, and it was a BIG hit!! We normally raise around $100-$150 in the raffle, but this time we raised $230!!! BIG THANKS to my awesome Kohl's associates who helped us raise another $500!!!......Rebecca, Jill, Sharon, and Patty!!! Thank you girls, you all ROCK!!!

That puts us at $3,000 raised from Kohl's so far this year!! Thank you KOHL'S!!!! (for some reason they are not showing on my Great Strides page, but they are there;) So all together with the 10% from the receipts, the total for that night will probably be around...$800!!! WOOHOO!!!! That's awesome!!!

Thank you so much to all who donated or bought tickets!!! There were some very generous people who threw $10 or $20 bills in the donation jar and didn't even want any raffle tickets! I'm always amazed by such generous people! BIG thank you to the winner of the raffle as well!! I won't mention her name since I didn't ask her if I could, but I was glad she won, b/c she bought the most tickets...$20 worth!! CONGRATS on winning if your reading this;-)

What made the night even better was I met a couple of people who knew somebody with Cystic Fibrosis! One told me of a friend or relative(I can't remember now, I want to say she was her niece;) that was in her 20's with CF and had 2 kids and was doing well. She had a little bit of a hard time with the pregnancies, but that's to be expected. Another told me of her friend, who I believe was in her 20's as well, who was also doing well. Stories like these give me hope for Lil' Chris' future:) Thank you ladies for sharing your stories with me and for your donations!!

As for an update on Lil' Chris....he is doing well. He still has that wet cough, but it's not as often as it was. I'm praying it goes away before needing an antibiotic. I'm always cautious to put him on an antibiotic if he doesn't need it b/c the more antibiotics he takes or is on, the sooner his body will start to reject them. There is only so many antibiotics or drugs, and once he becomes resistant to them all.....well, that's when he will get more and more lung infections and irreversible lung damage. The next step would be a double lung transplant. Then starts the waiting game and all the questions...would he get the new lungs in time?? Would his body reject the new lungs?? Even with new lungs, he will always have CF.

Many CF families can relate to this thinking. We all know it's a POSSIBILITY for their future. All we can do is have faith, hope, and trust in God, and pray that a CURE if found SOON!!!!! I pray that God gives Chris and I the KNOWLEDGE of when to call and get him put on an antibiotic...or any big decisions that may be in his future.

When Lil' Chris was first born in 2007, they told us that the life expectancy for CFers was 36....today it is 37 1/4!!!! We are getting closer and closer to a CURE or a better control of this horrible genetic lung disease EVERYDAY!! Now you probably see why I do all the fundraising I do, why I ask/beg for donations, why I organize and put together a Great Strides walk every year...all for "A Cure 4 Lil' Chris" and ALL CFers!!! I'M GONNA DO ALL THAT I CAN, TO SEE A CURE IN LIL' CHRIS' LIFETIME...I HAVE TO!!!

My next CF fundraiser will be on Thurs June 30th from 5p-8p at CiCi's Pizza in Wooster. The raffle will be the same as last time, 2 Indians tickets to a game of your choice. Hope to see you there!!

Thanks again to everyone who has donated this year and in the past! We WILL see a CURE in Lil' Chris' lifetime!! I just know it!!
M
PS. If you haven't donated yet and would like to, click here:) Even though the walk is over, we'll always still take donations:) Thanks!

Cough Video / $125 CF Survey

I'm gonna try to keep this short, but no promises;-)

I didn't post about it before, but Lil' Chris had a bad night the night before Ayla's birthday. We think it was the Chex Mix that he had. That was the only thing he ate that was different. He threw up about 5 or 6 times and was just laying on the couch from nap time to bed time.

Then this past Wed, it happened again! He didn't have anything new, so we still are not sure what caused it this time. He was fine all day, then when he woke up from his nap he was complaining of his head hurting right above his right eye. You could tell he was in a lot of pain, b/c tears were just coming down his face. I felt so bad for him esp since I didn't have any children's Tylenol in the house and I was just about out the door to go to an A-team event for Kohl's(Woo after School Skate Club). I told Chris to go and pick some Tylenol up when Ayla woke up, but he never got to b/c Lil' Chris started throwing up. The A-team event (actually it's called Associates in Action now) was for 3 hours. So afterwards, I called and Lil' Chris was sleeping on the couch, which NEVER happens, and his head still hurt and was throwing up. So I picked up some Children's Tylenol on my way home. He took it, but then threw up, so not sure how much actually got down. He did seem to start to feel better about an hour later though after a few more throw ups. He didn't eat or drink anything though, and we didn't do his Vest just like the night before Ayla's birthday. That's usually the only time I don't make him do his Vest. I don't want to stir anything else up...if you know what I mean;-) He slept good throughout the night other than asking for a drink of water, which I was more than happy to give to him. The next day, Oma said he was still complaining of his head hurting. She gave him more Tylenol before I got home from work and his head seemed better. He was complaining of a bellyache tho, but not for long. We have clinic on March 16th, so I'll have to ask the dr about all of this.

To top it all off....he has had a wet cough for over a week now. I sent a message to the CF clinic about his cough through My Chart. Does every clinic use My Chart??? I LOVE it!! I can send them messages, ask questions, see his chart, see his upcoming appointments, see his throat culture results, and more!! It's a GREAT tool that they added recently. Anyways, to make a long story short....he is started Bactrim last night, 10ml for 2 weeks. Since he was on Augmentin a few weeks ago for an ear infection, he couldn't go on it again, so that is why he is on Bactrim instead. He doesn't seem to mind it tho.

Photo and video editing at www.OneTrueMedia.com

To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $525!!! WooHoo!! You get $50 just for joining!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!!

Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Please pray Lil' Chris' cough goes away quickly and that it doesn't turn into anything serious.

So much for keeping it short;-) LOL!!
M

CiCi's Fundraiser / Domino Run

I had another CiCi's Fundraiser on 8/19! It was a pretty slow night and I didn't really have too much time to advertise it. We were too busy searching for a new vehicle for me. We ended up getting a 2007 Dodge Caravan!!! I LOVE IT!! I never thought I would be a van person, but I fell in love with the convenience of it, esp with having 2 kids!! I only wish that I would have gotten one 3 years ago when Lil' Chris was first born;) lol

Anyway, back to the fundraiser....we only raised $80 in tips and raffle. I think that was my worst yet;( But again, I totally dropped the ball in advertising it. Lesson learned!!

This fundraiser was cool, b/c I got to actually meet an ADULT CFer!! I have only ever met one other adult CFer in person and never really got to talk to him, so this was pretty cool:) I was going around to tables doing my usual telling everyone about CF, the fundraiser, Lil' Chris, and the raffle. When I came to this one table,...before I could finish, she looked at me and said she knows all about CF, b/c she has it! I thought, WOW! Here she was looking as healthy as can be, having dinner with her hubby and 2 kids!! I was so glad to meet her and asked her a ton of questions! LOL! I'm really hoping that they will come to our walk next year since she lives in town:)

Lil' Chris sure did have a good time when they came at the end:) Special thanks to Spencer for coming and inviting friends to come too:)

Make video montages at www.OneTrueMedia.com

Special thanks to my wonderful Kohl's associates who helped us get the $500 grant from Kohl's....

Stacie

Jill

Kaitlyn

Malinda

Patty

You girls ROCK!! Thanks for always helping us CF families!!! It means the world to us!! Even though we only raised $80, add the $500 and the 10% from the receipts and it should be around $700!!! Not bad!!

My next CiCi's fundraiser will be in October, b/c on Sept 25th my MIL set up a biker domino run for Lil' Chris!! This money will go towards Lil' Chris medical fund, which will one day be for a double lung transplant. You can never start too early raising money for a BIG surgery like that!! Thanks Oma for setting this up for Lil' Chris!! We can't wait!! I hope you all can join us in NJ for the Domino Biker Run:) If you have any questions, please let me know.
If you know any bikers, please spread the word!!! Thanks!!
M

Pray for Conner and Josh!!! / USA Today Article about CF

I know I said I would post Lil' Chris' birthday pics soon, but I have more pressing things to talk about today, or should I say ask of you today....

Lil' Chris' CF buddy, Conner, is not doing well. He is only 7 years old and is withering away thanks to this awful disease known as Cystic Fibrosis. I know what some of you may be thinking..."But I thought the life expectancy was 37?? He is so young!" Yes, the AVERAGE life expectancy IS 37, but that doesn't mean that EVERY CFer will make it to 37 or close to 37. If fact, click here to read an article in the USA Today. It hit me hard when it said..."Only a few decades ago, children with CF seldom survived elementary school. Today, thanks to earlier diagnosis and improved treatments, 47% reach 18 or older. Most of the 400 deaths a year are among teenagers and young adults, according to the CF Foundation's registry."

I guess I should be happy that it has come so far, but I'm not. I want it to be longer! I want the percentage to be higher! I want my son and all CFers to live a LONG full life! I mean 47% reach 18 or older???? 18??? That's it??? I guess I have fallen into that trap of wanting to believe that my son and all CFers will live to AT LEAST 37, but it's just not so in most cases. It's hard to except that fact. What can I do to make a difference???....fundraise, fundraise, fundraise to help find a CURE!! I have done a fundraiser every month so far this year except this month. I took a month off. Now I feel guilty...am I letting my son down?? Am I letting all the other CFers down??? I know I don't raise that much money with my fundraisers compared to some, but I also know that every penny counts!! I'll be picking up fundraising again next month. Thank God for my awesome fellow Kohl's associates who help out so we can get that extra $500 each time!! Thank You to all of you!!

Since I have started blogging, I have watched, seen, read of 3 CF mom's go through the worst thing a mother should ever have to go through....watching their CF child suffer to death and not be able to do a darn thing about it. It breaks my heart. I can't imagine ever having to go through this...I pray that I never have to. I pray and think often of Haley's mom, Ethan's mom, and now Conner's mom.

So I ask of all my readers...please click here to visit Conner's mom's blog and send her some encouraging words and lots of prayer for the whole family. Also, please pray for Josh. He has had a recent decline in his health too, but is getting stronger and is bouncing back. Click here to visit his blog and to see his very touching video that gave me goosebumps watching it....it's called "The Honest Truth." Thank you Josh for speaking the honest truth and sharing your journey with us!!

Thank you everyone for all your prayers. WE WILL CONTINUE TO FIGHT FOR A CURE FOR CF!!

Praying for Conner and Josh,
M

Meet Josh and Moganko....(CF momma's, you gotta check this out;)

I have been meaning to share someone with you for a while now, so here it goes.....

This special person's name is Josh, oh yeah, I can't forget about Moganko;)

Josh is an AWESOME, AMAZING, WONDERFUL, INSPIRING, CARING, FUNNY person who just so happens to have Cystic Fibrosis like Lil' Chris. I first came across his blog from another good CF friend, Ronnie. Thanks Ronnie!!

Josh is passionate about spreading awareness about CF and helping all the lil' CFers to better understand CF and to let them know that they are not alone. To do this, he has a special friend to help him...Moganko!! Moganko is a puppet:) Josh and Moganko do special episodes to cheer up those lil' CFers out there that need a good laugh:) They also teach these lil' CFers about CF and CF care and CF treatments. If you ask me, he and Moganko are "just what the Doctor ordered" ;) lol

Click here to check out his AWESOME blog and to see his best episode yet!! Also, please say a prayer for Josh, he is in the hospital right now and had to miss his CF walk this past weekend;(

Another Antibiotic;( Bactrum / R.I.P. Emily

Well, we are back to ANOTHER antibiotic!! He still has that nasty sounding cough, so I called the CF clinic today. They said to have him do Bactrum for 14 days and then they want to see him. He already has his annual clinic apt set up for June 16th, but they want to see him sooner b/c of this cough. The cough is from his cold I think, b/c after my cold I had a cough. My cough wasn't nearly as bad as his though. I guess his lungs just can't handle it as well as mine or a non-CFer.

They still need to see him on June 16th though to do his annual visit, which consists of blood work, chest x-rays, and seeing every doctor. It's usually a very long visit. I have a feeling it's gonna seem extra long this time since Ayla is getting older now and wants to walk around and touch everything;)

They put him on Bactrum this time, b/c it has only been a little over a month since the last time he was on an antibiotic(Augmentin). They don't like to do the same antibiotic so close together, so that is why we have to do Bactrum this time. I think Lil' Chris has only done Bactrum one other time. I could be wrong, b/c I tried to search it on my blog and nothing came up. I might be thinking of when he took Sulfatrim. It came in the same big HUGE bottle. One good thing about Bactrum versus Augmentin, is that it is only 14 days instead of 21 and it doesn't have to be refrigerated:) Lil' Chris took the Bactrum for the first time tonight, and he didn't seem to like the taste but he took the whole 10ml. I didn't think he was going to finish it, but he did thankfully!! Hopefully the taste will grow on him:)

So, Bactrum 2 times a day for the next 14 days at 10ml each time. 10ml seems like a lot!! Pray we get through this with no problems and pray that it works and kicks his cough right out.

I forgot to tell you what he did a while back that just about every kid does I think.......somebody guessed that he cut his own hair, which was a great guess, but what he really did was....tried to climb his dresser and it fell on top of him! Lil' stinker! Luckily he didn't get hurt. He said he wanted to touch the radio on top :) Here are some pics after I picked up the big part of the dresser...

Here is the radio he was trying to get and the frame that he broke.

Here is what I found behind his crib...pieces of paper from his books that we used to let him go to bed with. Now you know why we don't let him go to bed with books anymore;-) I wondered where he used to put all the pieces;) lol Ayla throws her socks behind her crib;) lol

Please also pray for Emily's family and friends. Emily was a 26 or 27 year old with CF who passed away on May 1st. She did many wonderful thing for Cystic Fibrosis. She was the ambassador of Pipeline to a Cure. I remember watching her video's a long time ago and they always just stuck with me. She was big on surfing and said that it helped her clear her lungs better and the salty air helped too. She was basically the reason why I wanted to move closer to the Ocean so Lil' Chris could be closer to the salty air. If we could afford it, I would.
At least now she is in a place with no CF. Breathe easy, Emily. You will be missed by so many! Click here to hear more of her story.
M

RED for Conner and Eva!!!

This was earlier today at Wendy's when we met Daddy for lunch:) Lil' Chris kept wanting to give Daddy some lovin:) Aren't they so cute?? He is saying "Awww" :)

Tomorrow is the BIG day!! Our 2nd walk for a CURE for CYSTIC FIBROSIS in Wooster, but our first OFFICIAL walk in Wooster. Last year was considered a practice run, I guess. But this year we are on the books and on the pamphlets!!! YEA!!!

It's been a lot of work, but it will all be worth it tomorrow when we hear how much we have all raised for a CURE for CYSTIC FIBROSIS!!!

THANK YOU AGAIN EVERYONE WHO HAS DONATED!! WE CAN'T PUT INTO WORDS HOW MUCH IT MEANS TO US AND TO ALL FAMILIES AFFECTED BY CYSTIC FIBROSIS. WE ALL THANK YOU FROM THE BOTTOM OF OUR HEARTS!!

If you haven't donated, but would like to still, it's not too late:) Click here to donate today and help make a difference in 30,000 children's and young adults lives.

Tomorrow for our walk, the theme is RED for Conner and Eva!! I've told some of those who are coming to wear something red. I also bought red ribbon that we can tie around our wrist, and I'm going to try to get red balloon's. I think the place opens after our walk is started though. I also told Pat Catan's to try to do a red craft. The kids will be making key chains. He will have lots of red beads if they want to do red:) Also, I asked Erica(our director) to bring crayons and red paper so that we all could make cards for Conner. I'm going to put together a box for him and send it. So if you have something you would like to include, please let me know.

Conner is a 7 year old little boy who has CF and Prune Belly Syndrome. He is the only one to ever be diagnosed both of these. He hasn't been doing so well lately and has had to rely mostly on oxygen. So hopefully these cards will make him feel better. Red is his favorite color and he always wanted to be a Fire Fighter when he grew up:) The doctors unfortunately said he only has a couple of more months left;-(

Eva was a 26 year old CFer who recently passed on to be with the Lord. She was well know by the CF world. She even made a CF movie in Canada. I hope someday to see it:) Her favorite color was red as well:)

Please keep Conner and Eva's family in your prayers.

Thank you all and I can't wait to see some of you tomorrow...rain or shine(hopefully not rain:)

M

PS. Please pray for Lil' Chris. He has been coughing the last couple of days. He is getting over a cold, so hopefully it's nothing more.

CF Commercial / Cross-contamination / Some Awesome People:)

Here is our commercial for our Great Strides Walk for a Cure for Cystic Fibrosis for this Saturday, May 1st. My hubby and I put it together. Big THANKS to Logan and Daniel for their pics of them doing nebs and Vest treatments!! I wanted a pic of nebs, b/c Lil' Chris doesn't do any, but it is a HUGE part of the everyday life of a CFer and I wanted to display that. So THANK YOU LIL' FELLOW CFers!!!

Make video montages at www.OneTrueMedia.com

Daniel will be at the walk, along with Jack who is another lil' local CFer. Lil' Chris won't be there though:( I just can't bring myself to take him. There is such a thing as Cross-contamination. CFers carry different bacterias in their lungs and they can pass those bacterias onto other CFers. It doesn't affect non-CFers, but it could affect other CFers and others who may have any other type of lung diseases. I know we would all do our best to keep them apart, but Lil' Chris has been doing sooooo well and we just don't want to take any risks. Plus, I remember reading this comment on Mugga Bugga's blog from an adult CFer last year and since then, I REALLY don't want to take ANY risks...

Natalia Ritchie said...
My school of thought is CF people should always be separated from each other. Always. That's how my mom and dad did things when I was little, and I later on when I was a teenager and adult. I have seen too many c negative people become positive as a result of being in the same social circle. My docs always tell me to remember that cepacia can be in your body undetected for 2 years. Meaning just because someone is negative does not mean it is safe. This is what happened last year at my clinic, a group of kids were hanging out. All negative. There was this idea that this was safe. Within 9 months, 5 contracted cepacia, and now 3 of those 5 are no longer with us. I never understood why take those risks? The more doctors I talk about this with, the more tell me to do whatever it takes to keep myself cepacia free. I was even told by one of the leading infection control doctor in NY that we still don't know exactly how certain strains are contracted. She told me, if she was a CF patient, she would never be in the same vicinity as another CF patient, except when without choice such as clinic and hospital. I think it's a scary reality, but I think it's good practice. When people acuse me of being rude or not being apart of the CF community, I just don't care. This is my life. And certainly I don't want to infect and harm someone else with my strains or infection.I know it seems harsh, but I have seen such tragedy as a result of cepacia. xoxo

Now you probably see why I don't take Lil' Chris to our walks. I hate it though. I wish I could take him and not have to worry, but it is better to be safe than sorry. We'll see when he gets older and actually understands that we do all this for him and he knows to stay away from other CFers. The other day when we went to go get our pic taken for the local newspaper, Lil' Chris had to sit in the car for 1/2 an hour(the guy was late) b/c Daniel was out running around. Nothing against Daniel or anything, I am just very leery about having them so close. I almost didn't even want to roll down the windows!! I'm so bad. lol I just can't help it! I want to keep him as healthy as possible and Daniel too! Lil' Chris cultured something weird last time and Daniel doesn't need any new bacteria's in his lungs. I'm happy to report that Lil' Chris, Jack, and Daniel all had a GREAT year!! I just want to keep it that way:)

Our walk is THIS Saturday!! I can't believe how it snuck up on me!! If you haven't already sponsored me, please click here to see Lil' Chris' CF video and to make a quick on-line donation today:) Thank you to those who have already sponsored me:) It's greatly appreciated!! BIG THANK YOU to Amy K. at work who sent an email to her friends and family to get donations and has raised almost $100! And a BIG THANK YOU to Kevin and his mom Deb(our old babysitter;) for going around and getting donations and sponsors from their work and friends and family!! YOU GUYS ROCK!!! They have raised $315 so far and will probably have between $400 and $500 soon!! I'm sure you all agree with me when I say they TOTALLY ROCK!!! Thanks Kevin and Deb and all your donors:) You are all AWESOME!! The kids miss you Deb and so do we;-(

The coolest thing just happened!! I got an email from a complete stranger that saw our commercial on TV and found my blog by googling the walk!! Isn't that awesome?! Her name is Mallory and she will be coming to the walk this Saturday!! YEA!! She told me that she has a friend that lives in California that has Cystic Fibrosis, so she wanted to do anything to help out. Isn't that soooo nice?! I can't wait to meet her and her husband this Saturday:) She's going to try to get her friend to come to our walk next year:) That would be awesome! See you Saturday Mallory:)

M

PS. If you live in town, check the Daily Record today. There is a picture of us 3 local CF moms and an article about our walk:)