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

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

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

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

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

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

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

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

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

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

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

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

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

2012 Great Strides Totals / TOBI Update

Totals are in for 2012 fundraising...our walk raised $16,800 for a CURE for Cystic Fibrosis!!! WOOHOO!!! We've come a long way since our first walk where we raised like under $5,000 I think:) Each year we raise more and more for a CURE for Cystic Fibrosis and I can't THANK YOU ALL enough!!! It means soooo much to all us CF families!!!

Our A Cure 4 Lil' Chris team raised $6,967!! WOOHOO!!! That's awesome!! My calculations were over $7,000, but one of the Kohl's grants took longer than I thought and actually is on my new 2013 Great Strides Walk page:) That's ok, I'm starting off with a bang!! Although had I realized, I would've put in the extra $33 to put us at $7,000 ;-) LOL Oh well! Here is my link for 2013, who's gonna be my first sponsor? Remember, it's 100% tax deductible...

http://www.cff.org/Great_Strides/LilChrisChris6765

Yesterday we had a GREAT 1st meeting to kick off the new fundraising year and start getting ready for the walk this May 5th, 2013 at 11am!!! I'm really excited about this year, b/c we have 2 new committee members who are really motivated to not only have a great walk, but most importantly raise as much money as possible for a CURE for our little ones and all CFers. Big THANK YOU  to Samantha and Denna for being so passionate about a CURE and wanting to help in any way!! 

Samantha has a 9 month old CFer named Aubrey. She is the cutest lil' thing:) She was diagnosed at 3 months old. Her older sister, Makayla, went to preschool with Lil' Chris:) I wish they could hang out more often since we live so close, but it makes it hard having cfers in both families as we have to be careful of cross-contamination:(

Denna has a 9 year old son named Aden with CF and another son without CF named Alex. Aden was just diagnosed a little over a year ago. Denna has a great outlook on becoming a committee member, "It'll be good for not only myself but also Aden and Alex. Just for them to learn that no matter how small the contribution, every person can make a difference." Together, the 5 of us...Denna, Samantha, Alma, Kathy, and myself...can and will make a BIG difference!! :) Denna has already jumped in and has started getting things going for the walk and it's only been one day!! And Samantha has already gotten prizes for the walk and has done a few fundraisers already!! I'm soooo proud of these 2 ladies and proud to have them on our committee:) It's gonna be a GREAT Year!!

BIG THANK YOU TO NANCY, my sister D's mother-in-law, for doing a Yankee Candle fundraiser for CF and raising $267.60!!! WOW!!! That's AWESOME!! The cool thing is...I didn't even ask Nancy to do this, SHE came to me with the idea!! I LOVE her passion for a CURE for CF!!! Nancy has always been a BIG supporter of Lil' Chris and has donated each year and is always thinking of new ways to raise money for a CURE!! I can't THANK YOU enough, Nancy!! We love you!!

As for a CF update on Lil' Chris...his TOBI should be arriving today on our doorstep. This will be his 2nd time on TOBI and Cipro. We have had the Cipro for a few days now, but we had to wait until the TOBI got here to start it, b/c they have to be taken together. If he cultures Pseudomonas again after this next 28 days of treatment, then he will be on just TOBI, not Cipro and TOBI, every other month:'( Please pray this doesn't happen. If it does, then we'll take it one day at a time. 

WE NEED A CURE NOW!!!!!!! They are soooo close with the new drug Kalydeco combo. Lil' Chris just needs to stay as healthy as possible until it gets done Phase 3 and clinical trials, and gets approved by the FDA. Please pray this is a CURE or a better control of the lung issues associated with CF!

Thanks everyone,
M  
PS. Happy Birthday to a faithful blog reader, Kevin W.!!! Hope you have a great day!!! ;)

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

CF Clinic Visit / Pulmozyme / 3rd PFT

Lil Chris had his first quarterly visit of the year with the CF clinic today at 4 1/2 years old. His weight went up from 40 lbs to 41.2 lbs, 60th percentile. YEA!! His height was up from 42 inches to 44.5 inches, 90th percentile!! His BMI on the other hand went from 30th to 20th percentile. BOOOOO. His doctor asked me if we have a lot of tall people in our family. LOL! She said that his BMI is so low b/c he is getting very tall quickly. She didn't seemed too worried about it even though they like CFers to be above the 50th percentile.

I told her how he has been eating a few more things since last time....jelly sandwiches, and cheese & mayo sandwiches, and I told her how he likes chicken nuggets and he even ate 10 one day for lunch!!!

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She said that his lungs sounded clear and everything looked good and we wouldn't change any meds. I asked her if he should stop the Bactrim in a couple of days when it is done, or if he will need more? I told her he isn't coughing much, but when he does cough, it is a little wet sounding still. She said to stop it when its done. He didn't cough the whole time we were there until right at the end. She heard that little wet sound and said lets do a PFT test and then she would come back and make a plan of attack. She said she would like him to not have any cough at all and he shouldn't have a chronic cough yet.

He did great on his PFTs, but they were a little bit lower than last time. The girl said it was probably b/c he is just getting over a cough. Last time his FVC was 94 and his FEV1 was 94...this time it was 89 and 96. One went down and one went up.

FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired.

FEV1 - Forced Expiratory Volume in One Second - this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory manuever.

When we came back in our room, I thought we were going to get to talk with our dr about a plan of attack, but we'll call her "nurse P", the nurse was there waiting for us with a bag. My first thought was OH NO!! She said that our dr thinks we should start Pulmozyne daily before his vest in the morning(I think Nurse P had some influence on this decision). This is a mucus thinner. It will help thin his mucus so that he can cough it up easier and spit it out. This "may" get rid of his cough, but it also may not be right for him. We would have to try it and see. It is about a 10 min neb, so we would have to get a nebulizer machine. This would be his first nebulizer medicine!! It's supposed to be done before his vest, but he can do it during his vest she said if we are running late.

Nurse P suggested in the beginning of our visit that he should do his Albuterol and Acapella every day instead of only when he has a cough. That he should get used to doing it now while he is young, since he will have to do it every day when he is older. If you look at past posts, you'll see that Nurse P is the one and only nurse that has always said he should be on a neb. I'm sorry, but if our dr's never thought he needed it then.....

So I was trying to ask her some questions about this Pulmozyme and she was telling me about it and how it will have to be sterilized each day and everything....but she wasn't exactly saying how long he would have to do this Pulmozyme. I kinda knew deep down from knowing so many CFers, but then she said that this would be "FOR THE REST OF HIS LIFE!!"

Just hearing those words again was a shot through the heart. We first heard them on the day of his diagnosis..."he will have Cystic Fibrosis FOR THE REST OF HIS LIFE"...."he will do his Vest FOR THE REST OF HIS LIFE"....and now "he will do this Pulmozyme, Albuterol, and Acapella FOR THE REST OF HIS LIFE???"

So today's clinic visit was a little frustrating for many reasons to say the least...

1. When we got there, we had to wait in line....yes, I said wait in line with other CFers....just to check in. 3 or 4 other kids like Lil' Chris, all wearing masks and within a few feet from each other!!! I was FREAKING OUT inside!! I let the girl know when it was finally our turn!! She said something about it being busy, and I said "Yeah, it's making me VERY nervous all of these CFers so close!" She got the hint and moved us along quickly.
2. Nurse P suggested doing Albuterol and the Acapella EVERY DAY....sorry, but I'd rather a dr tell me something like that!
3. The dr said she was coming back in our room after PFT's and she never did!
4. The nurse has to tell me that he will have to do this nebulizer FOR THE REST OF HIS LIFE!! Again....I'd rather hear something like that from a DOCTOR!!! Just makes me mad!!
   

I don't mind doing this neb if it's really going to help him, but if he doesn't really need it, then I'd rather not start him on it until he needs it.We do have to worry about him becoming immune to certain meds, as he may need them more when he is older.

Some CF Questions...

1. Can Pulmozyme be used just for coughs or does it have to be used long term?
2. Is it something that he would have to be weaned off of once his cough goes away?
3. Can he become immune to Pulmozyme after a while? It seems like just about every CFer I know, young & old, do Pulmozyme every day. I need to do some research!
   

So, I was told to go home and talk it over with my husband and decide whether we want to go ahead and do it every day for the rest of his life, try it for 30 days, or not try it at all. It's up to us. GREAT!!! I talked to my husband and he said he doesn't think he needs it yet and to just wait and see how he is when his Bactrim is done. He said that his cough usually isn't all gone until right at the end of the antibiotic anyways.

I miss our old dr. He used to put Lil' Chris on an antibiotic for 30 days and his cough would be completely gone by the end of it. Ever since we got this dr, she only wants him on antibiotics for 15 days...his cough isn't gone in 15 days!!!! So frustrating, b/c I've tried telling her this, but she doesn't want him on it longer than 15 days. I guess b/c you run the risk of becoming immune to it sooner...idk??? It just seems like he hasn't completely gotten rid of his cough in a very long time. As a CF parent you just feel so defeated...have we made the right choices in the past...are we going to make the right choice now???

All I can think of is to "empty my hands" and leave it up to God. I'm going to pray about it and follow God's lead as to what to do. Please pray with us for God's guidance and strength. Deuteronomy 20:4 "For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory." Cystic Fibrosis is our enemy....go get CF God!! :)

On a good note, Lil' Chris did such a GREAT JOB at clinic today!! He did so good during his throat culture that the nurse said that he should teach all the other kids to do it as good as him!! Nurse P asked if maybe we could get a video of him doing his Acapella and PFT's to show the other kids who don't even do it at this age!

In the 2 hours we were there, the kids were really good between watching TV and playing with the iPad, that I just had to take them to Chuck E Cheese! I didn't really feel like going after we got hit with the Pulmozyme news, but I knew I had to be strong for the kids and not let them see me get upset. So I let them play and I vented to my sister D on the phone:) Thanks D for always being there for me!! I'm trying not to talk negatively about it near Lil' Chris, b/c his lil' ears hear everything, if you know what I mean;)

I'll let you know what his throat culture results are when I call in a couple of weeks. Please pray that there are no new bad bacterias.

Sorry for venting on here, but sometimes I just gotta let it out!! I know Pulmozyme isn't the worst thing. It could definitely be worse!! Lil' Chris has been soooo blessed that he has made it 4 1/2 years with no nebulizer!!! It's almost unheard of in the CF world!! Some of my CF friends probably think I'm crazy complaining over just a neb, but it's just the "FOR THE REST OF HIS LIFE" thing that gets me. I'm sure every CFer and CF parent feels defeated every time they hear those words. WE NEED A CURE NOW!!!!!!! Time to start fundraising!! I need to clear my head of all of this and focus on fundraising, so that no CF family will feel this way ever again!!!!

Thanks,
M

CF Update / Ice Skating Video / Ayla potty training update

A quick update: Lil' Chris' cough is all better. YEA!! NO ANTIBIOTICS!! WOOHOO!!! Good thing too, b/c I was fighting back and forth with our insurance for a few weeks! He even had to go a week or so without his Prevacid and Aquadek. I def noticed a difference in his stools when he wasn't on the Prevacid! They were def oily. I didn't think the Prevacid did that much, but I guess it does.

Ayla on the other hand started with a stuffy nose and a lil' cough last week. I think it might just be either allergies(mine have been bothering me in the AM too), or she's getting her molars or something. So far Lil' Chris has not caught it and neither has my husband or I...which leads me to believe it's not a cold. She is getting better now though and it's almost all gone. On a good note...she is doing EXCELLENT with her potty training at night time!! I lost count as to how many days in a row it has been now that she has woken up dry!! YEA!!! :)

I've been working on our Christmas video. I finally uploaded most of them, but it is like 38 minutes long. YIKES!! So I'll try to cut it down for you all:) Soooo probably by next Christmas I'll have it done;-) LOL

As part of an AiA event for Kohl's, we have had the opportunity to go ice skating these last few months and the kids LOVE it, and so do I ;)!!! I may have to get some lessons for them:) Today, Ayla finally skated ALL BY HERSELF!!! (with the help of the red walker, that is;) LOL Lil' Chris was racing and going super fast...I couldn't believe it!! They both make me soooo proud ice skating so well at 2 and 4 years old!! It was a little scary when we went today, because Jack, a fellow CF buddy, was there too. So I was extra careful to keep the boys far apart. CFers can share bacterias, so they can't be around each other. Below are some pics and video's of the last couple of times we went...

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We have some pretty big news for the kids in the next couple of days!! YEA!!! I'll try to post their reaction if I can catch it on camera:)

Thanks for always checking in on us:)
M

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!!

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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

Clinic Visit

MY BIG, BRAVE BOY....

Today was Lil' Chris' clinic visit. He goes every 3 months just like most CFers. This was the first time Daddy and Ayla didn't come with us;( Although we missed them, we still had a GREAT visit!! He wore his hospital mask from the parking lot to our room, and then in the hallway when he got his height and weight check, and then from the room to the car! What a BIG 3 year old, huh? He makes me more proud every time we go to clinic:) He did such a good job and was such a good boy the whole time, that I took him to Chuck E Cheeses as a reward:) He had a BLAST!! I LOVE watching him have fun and seeing his BIG smiles and hearing his cute lil' laughs:)

Here are some pics from our day....

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His height and weight were good I guess, this new doctor didn't really say much. She didn't even tell me his percentages or BMI! I wish they would at least put it on the paper that they send us home with! Anyway, his weight last time(3 months ago) was 33 lbs and 2 ounces, this time it was 34 lbs and 5 ounces. So he DD have a gain...YEA!! Not sure how, since he doesn't eat much and hasn't been taking to the Scandishakes ever since the last time he was on an antibiotic! Last time his height was 38 1/2 and this time it was 39 1/4. Can't believe he is getting closer and closer to that 42 inches so he can go on the bigger rides;-) LOL! Next year will be so much fun!! :)

The doctor said that his lungs were CLEAR...YEA!!! I was a little worried, b/c he has a bad cough right now, but she did put him on another antibiotic;( I guess this is going to be the norm now...an antibiotic every other month;( That STINKS!!! But...at least he doesn't have to do any nebulizors yet...PRAISE THE LORD!! So he has to take 3.5 ml of Augmentin again for the next 14 days. I tried convincing her of doing the 21 days instead, to make sure the cough is gone b/c last time he was still coughing a little after the 14 days. She wouldn't go for it. I was told different doctors do different things. Our old dr. always did 21 days and this dr. always does 14 days, b/c the less time they are on antibiotics the better she says. I was told that to call at day 12 if he is still coughing and then she would prescribe another week. I guess we'll see how it goes and pray that his cough is gone by the 12th and doesn't turn into anything serious.

He got a throat culture done like usual and Lil' Chris did a GREAT JOB sitting on the table all by himself and he opened wide, stuck out his tongue, and said "Ahhhhh!" I was so proud of him!! The nurse got a great culture too...it had some yucky brown gunk on it. I've never seen that on his cultures before. I hope that isn't a bad sign. They told me they would let me know on Monday what the results are. They are going to tell me sooner than usual, b/c I told them that we are going to be around Li' Chris' cousin, Nathan who has Leukemia, next week. They said that if he cultures something bad, then he shouldn't go near Nathan, but if he cultures what he has been culturing lately, then he should be fine to go around Nathan as long as Nathan's white blood count isn't low. I asked if I could have some extra lil' kid masks just in case, so that the boys can at least see each other for a little bit. Please pray that Lil' Chris doesn't culture anything bad and that Nathan's white blood count is good and that Lil' Chris' cough goes away quickly.

A few weeks ago Lil' Chris started not wanting to take his chewable Vitamax. Vitamax is his CF vitamin. It consists mainly of vitamins A, D, E, and K. CFers bodies don't absorb these as much in the foods that they eat, so that is why they take some sort of this kind of supplement. I'm not sure why he suddenly started not wanting to take it, but I called the clinic and my favorite nurse sent us a couple of different liquid ones. He seemed to take to the Source CF one, so I told the doctor today and she gave us a prescription. It kinda stinks to go back to a liquid, but he NEEDS it.

Lastly, on our way out, we stopped by Kendall's room:) She is a fellow CFer about 15 months old in our area. I met her dad on Facebook and then I met her grandma in person at my Friendly's fundraiser earlier this year:) Today we got to meet Kendall herself, well almost, we got to see her for a minute and then they closed the door so they wouldn't share bacterias even though Lil' Chris was wearing his mask;) LOL! We did get to talk to her mom, Heather! She is super nice, they all are really great!! I wish our kids could have play dates, but CFer's shouldn't be within 3 feet of each other for risk of cross-contamination;( Maybe someday us parents can get together to chat though:)

Thanks everyone for checking in on Lil' Chris and for all your prayers. They are definitely working, so please keep them coming!!!
M

PS. Lil' Chris' cold seems to be gone...YEA!! Ayla's nose is still a little bit runny:(

Our 2010 Walk for a Cure for Cystic Fibrosis!

Photo and video editing at www.OneTrueMedia.com

We had a GREAT day today at our CF walk:)

We had a great turnout, about 70 people. Not bad for our second year!!

We had lots of food and a whole lot of fun!! =)

Thank you to everyone who contributed to this fabulous day:)

Thank you to all our walkers and all who sponsored me and Lil' Chris:)

WE GREATLY APPRECIATE EVERY PENNY!!

Thank you to all of our food sponsors:

Panera Bread

Buehler's

Domino's

Papa John's

Pizza Pan

McDonald's

Culligan's Water

And Thank You to our wonderful prize sponsors:

Special Thank You to our entertainment:

Pat Catan's Craft Store

Wooster Fire Department

Our Balloon Maker: David Lohnes

You guys were AWESOME!! The kids had so much fun!! And so did I;-)

Last year our walk raised a total of $7,500, I think. By the end of this year, we will have raised close to $13,00!!! WOOHOO!!! Kohl's alone will have brought in a total of $5,000!!! THANK YOU TO ALL MY WONDERFUL KOHL'S ASSOCIATES THAT HAVE PARTICIPATED IN MY CF FUNDRAISERS AND WALK!!! YOU GIRLS ROCK!!

Thank you to Jack's Pack and Daniel's Friends for all your donations and support:)

Especially thanks to all those who say a special prayer for Lil' Chris each day and for ALL those suffering with Cystic Fibrosis! We greatly appreciate it!

As great as a day as it was, I was still sad every time I got a second to look around, b/c I knew Lil' Chris would have LOVED EVERYTHING!! He's at that age now where he would have LOVED the Fire Trucks, he would have LOVED the craft, and he would have LOVED all the balloon animals. Most of all...he would have LOVED just being there and running around. Maybe someday I will get up the nerve to take him. It's just hard with the possibility of cross-contamination.

M

PS. If Lil' Chris' cough doesn't get any better by Monday, I'm going to call the CF clinic to get an antibiotic. He is not sounding too good;( Please keep the prayers coming.

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!!!

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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:)