8th Annual CF Walk is this Sunday!!

Our 8th Annual Cystic Fibrosis Walk is THIS SUNDAY, May 7th at 266 Oldman Rd in Wooster!! Check in is at 11, and the walk begins at noon! It's free to go and there will be free food, snacks, drinks, balloon animals, fire truck, ambulance, police car possibly with K9's doing tricks, craft table, and more!! Let me know if you are coming!! It's fun for the whole family!! Please click this link to register to walk or donate/sponsor us to walk!!

BIG THANK YOU to those who have donated so far...Cara, Eva, Rafe, Danielle & Steven, Al & Nancy, Dad, Rachel, Marie & Sam, Dustin H, Mom, Stacy W, Martin & Jamie, & Dawn!! Thank you for helping Chris win the CF teddy bear and CF blanket too!! He LOVES them!! :)

http://fightcf.cff.org/goto/A_Cure_4_Chris 

I know I haven't posted in awhile, but like I always say...No news is good news!! :)

I haven't had time for much lately, because on 1/29/17, I got promoted to Store Manager of the Akron Kohl's!! :) I LOVE it and have a GREAT team!! Unfortunately, it doesn't leave me much time to blog, or do as much fundraising as I would like. Luckily my Mother-in-Law lives close and has been a tremendous help in getting things ready for our walk this Sunday!! Thanks Oma!! :)

As for an update on Chris, he has been doing well. He is up to 3 enzymes with every meal and snack now(he was at 2 with the new red pills). He also takes a chewable vitamin now instead of a gel one. He hates it, but we can't get the gel ones anymore:( He is still taking Prevacid daily and Claritin. His nose runs a lot during allergy season, so we are going to look into a different allergy medicine. I think he may have become immune to the Claritin because they keep him on it all year long and he has been taking it for a few years now.

He still does his Vest 30 minutes in the morning before school and 30 min at night before bed. Thankfully he has only had 1 bad cough this past year and only had to take an antibiotic once. I think it was right before Christmas. He still does well with his Pulmozyme neb every night. He even washes his neb cups now!! :)

The only area of concern right now, is that he has had to use his puffer(inhaler) more often recently because he gets these weird chest pains. We try to make it go away with manual CPT too. It usually seems to happen when he is at the soccer fields. So we have started giving him his puffer before we leave for practice or games now. He also has been getting a lot of stomachaches off and on. We mentioned it to the dr last time and she recommended he try new enzymes with his meals and snacks. They gave us one bottle to try, but it only has enough for one week. Not sure that's long enough to tell, but we are going to try it once school is out so the school doesn't get confused with which pills to give him. We are praying that this is the answer. Chris doesn't want to take them though, because he will have to take 5 of them instead of 3 with each meal and snack. I'll let you know how it goes.

He has his annual CF clinic appointment coming up in June where he gets his bloodwork done and is usually a 3-4 hour visit. Please pray all goes well and he gains weight and has a good PFT!!

Thanks again for all who donated and keep up with Chris' CF journey!! I'll try to post again in less than a year this time;p LOL

M

New Enzymes 1/29/15

Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)

One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??

A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.

At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.

So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)

As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!

Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)

I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!

Have a GREAT day!!
M

5th Annual CF Walk Results

WOW, I have so many people to thank, I don't know where to begin...;)

First off, BIG THANK YOU to all who walked with us and helped get donations for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis!!! So many of you have brought tears to my eyes with your dedication to raising the much needed money for a CURE and longer life for my son. So many of your friends and family have so generously donated even though they don't know us. I will be forever grateful to YOU and THEM!!! Every penny gets us closer and closer to a CURE!!

THANK YOU...
David and Debbie C. (raised over $1,000!! AWESOME JOB, the most EVER from a team walker!!:)
Kevin and Jessie W.
Deb and Mike W.
Stacy W.
Kristin K.
Ashleigh and Cody S.
Andrea and John S.
Lynnette and Jillian C.
Miller Family
Gail R.
Butler Family
Spencer H.
Josh W.
Cody S.
Robbie and Jamie
Rosie C. and family
Morgan, Ella, and family


BIG THANK YOU to those who have donated towards my team, A Cure 4 Lil' Chris!! I know most of you live very far away and can't make it to our walk, but I'm so grateful for your support and generous donations to help end Cystic Fibrosis!!
THANK YOU...
Barb N. (Thanks for my first ever reoccurring monthly donation!!:)
Steve, Danielle, Cara, Eva, and Rafe S.
Al and Nancy S.
Aunt Mar
Centeno Family
Dad
Aunt Donna and Uncle Jerry
David and Elizabeth Harcus
Mom
Paul and Kim S.(made my birthday with their donation:)
Rachel P.
Stacy W.
Carol S.
Holly S. (Thanks for doing your party to raise money for CF!!)
Tiffany L.

BIG THANK YOU to the business sponsors I got this year! We are soooo grateful that your business would help support our great cause!!
THANK YOU...
Kohl's ($5,000)
Sprint Preferred Wireless($500)
Anonymous Sponsor($250)
Verizon on Cleveland Rd($125)
Wayne Savings Bank($125)
The Borelli Agency
Alice Noble Ice Arena
MCTV
Sign Design Wooster
Dominos
McDonald's
Panera Bread
Jimmy John's
Woo's Brew
Speedway for ice
Everyone who made cookies
Pat Catan's
Wooster Fire Dept
Samaritan Care
The Cat's Meow
Dr. Dave

I gotta thank my AMAZING team at Kohl's for doing all my CF fundraisers throughout the year and for coming to our walk! I can't thank you guys enough for all the support and for helping us raise $5,000!!
THANK YOU...
New Philly Kohl's for driving all the way to Wooster to our walk:)
Scott
Dorrice
Ramona
Sarah
Rachel P
Devin
Jolleen
Laura
Claire
Jen M
Jen E
Stacie M
and I'm sure many more that helped out at one point or another with my fundraisers:)

 

I'd like to thank our AWESOME Wooster Christian School Team that walked with us too...
THANK YOU...
Mr. Claes
Mrs. Falkenberg and family
Mrs. Curtis and family
Jillian and family
Tripp and family
Alexis and family

BIG THANK YOU to Mrs. Falkenberg(Ayla's teacher) and Mrs. Buehler(Lil' Chris' teacher) for collecting change for CF over the past few months in the classrooms!! And BIG THANK YOU to all the kids who brought their change in to help support a cure for Lil' Chris!! We are very thankful to you all!! Wooster Christian School is the BEST!!!!

Our whole walk was a HUGE success and so much fun!! We had about 200 walkers!! WOOHOO!!We had 8 different teams!!  All together, the teams brought in about $5,000 to the walk!! Together with what was raised online with all the teams, and what was brought in, and what will be coming in soon, it totals to about $28,409!!!! That's AWESOME!!! The most our walk has EVER done!! BIG THANK YOU to all the teams for raising so much!!

Our A Cure 4 Lil' Chris team brought in $10,195 so far!!! OUTSTANDING!!! THANK YOU ALL!!! We will still be collecting donations until Sept, so hopefully we can do some more fundraisers and hit $30,000!! THANK YOU EVERYONE SOOOOO MUCH!!! I'm sorry if I didn't get to talk to everyone at the walk...as you could see, it's kind of a crazy day for me making sure everything runs smoothly;) Our CF Northern Ohio Chapter, which is a total of 7 different walks, raised a total of $652,108!!! I smell a cure coming!!:)
 BIG THANKS to the Lord for the beautiful weather and no rain!! Thank You for answering our prayers, b/c it was supposed to rain that day.

We are having a big community garage sale this Sat from 8am-4pm and everything sold from our house will go towards a CURE for CF!! The other houses in our neighborhood are selling baked good for CF!! We just love our neighbors:) They have always been such big supporters of Lil' Chris!!

 

 

I started a new business called It Works! They are those crazy skinny wraps that everyone is talking about that work in just 45 minutes:) I tried them, and they ACTUALLY DO WORK!! So, I decided to spread the word about them to help out other people. I will be selling them at my garage sale too, and a percentage will go towards a cure for Cystic Fibrosis!! I originally started this company with intent to have all my commission go towards CF, but then my husband ended up losing his job 10 days later, so not all will go towards CF, but most of it will:) Come see me if you want to try one!! Message or email me for address lilcmom@gmail or you can order straight from my website www.wraps4cf.com. I've been doing pretty well, b/c the results sell the products, not me:) If you'd like to join my team and be debt free, let me know. It's only $99 to join and you get a box of wraps that you can sell for $100...so you earn your money right back!! Now is the time to join, b/c this company is skyrocketing, esp with Summer approaching:)

I'm sure I forgot about someone to thank, but please know that we GREATLY APPRECIATE EVERYONE and EVERY PENNY RAISED!!!!

We hope to see everyone again at our walk next year!!!
M
PS. Lil' Chris didn't have the best last CF clinic apt. He didn't gain any weight, CFers need to eat lots of calories to stay healthy. He has his annual CF clinic apt this coming Wed, so I will let you know how it goes. Pray for great results all around, b/c our Make A Wish trip is coming up soon!!! YEA!!

CF Clinic Visit and Results 1/8/14 6 1/2 years old

Lil' Chris' 3 month check-up at the CF Clinic last Wed went GREAT!!!

Here is the comparison from his last visit on 9/18/13(you can always find this list on the right hand side of this blog;)...

-9/18/13 51.8lbs, 49 inches, 44% BMI, 94/82 PFT

-1/8/14 52.5lbs, 49.5 inches, 36% BMI, 95/88 PFT

 

As you can see, he gained some weight, got taller, his BMI went down(b/c he got taller), but his PFT's went UP!!! I was worried his PFT's were going to be bad, since he just got over a cough, but he did a GREAT JOB blowing until his face turned red!! I think that was the best he ever blew!!!

 

They did a throat culture and I already got the results back that it is "NORMAL" again!!!! WOOHOO!!!! I couldn't be happier!!! It was a year ago this month that he had cultured Pseudomonas(really bad bacteria). Since then, he has cultured "normal" which is AMAZING!!!! Pseudomonas is usually VERY hard to get rid of, so PRAISE GOD it stayed away!!!

 

He also got his annual chest x-rays done. He still needs to get his blood work done, but we have until his annual cf appointment on 6/4. He was supposed to get blood work done last year, but once school started it was hard to find the time to go and get it done. He gets blood work done every year and chest x-rays every other year.

 

They did see some more scarring in his lungs, which isn't good, but they said that is normal for a CFer:( I was really hoping to keep his lungs from scarring before a CURE came, but we do everything we are supposed to do and he only had like 1 bad cough in the last year, so idk.....

 

I asked the doctor about the chest pains he gets sometimes, and she said to try Tums. We usually just do his Albuterol puffer, but lately we have tried the Tums too. Not sure if either helps or not, b/c it usually only lasts about 5-10 min. The day after clinic, he had those chest pains about 4 or 5 times. We actually picked him up from school at noon. Not sure what is causing it. We thought maybe it's heartburn or something. His doctor doesn't think it is CF related. She thinks it might be Precordial Catch Syndrome(Texidor's Twinge). http://en.wikipedia.org/wiki/Precordial_catch_syndrome or http://www.precordialcatchsyndrome.org/causes-symptoms-and-treatments-for-precordial-pain/

 

Precordial Catch Syndrome (PCS), also known as Texidor's Twinge, is a common cause of chest pain in children and adolescents. It also occurs, though less frequently, in adults. PCS manifests itself as a very intense, sharp pain, typically at the left side of the chest, generally in the cartilage between the bones of the sternum and rib cage, which is worse when taking breaths. Patients often think that they are having a heart attack which causes them to panic. This pain typically lasts from 2 or 3 seconds to a few minutes, though, in some cases, they can persist for up to 30 minutes. The frequency of episodes varies from patient to patient; sometimes occurring daily with multiple episodes each day, or on a less frequent basis with weeks, months, or even years between episodes. On rare occasions, breathing in or out suddenly will cause a small popping or cracking sensation in the chest, which results in the pain going away. In most cases the pain is resolved quickly and completely, and medication is not needed for the pain to subside. There is no known treatment or cure for PCS.

His CF doctor said that most likely the Albuterol and Tums won't help it. It will just go away on it's own after a few minutes. She said there is no real concern and suggested that we get him checked by his Pediatrician to make sure nothing else is going on. So I will be making an apt soon if it continues. I hate to go to his Pediatricians during cold and flu season, but if this continues, we will go. Please pray that these pains never come back and that it's not something worse!!!

 

Thanks for all your continued prayers,

M

PS. I got to meet a fellow CF mom, Lesley, that I'm friends with on Facebook at clinic, and her son Cohen with CF. It's always nice chatting with someone else who "gets it" ;) Glad Cohen had a good visit too:)

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

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

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

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

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

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

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

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

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

Soooo Needed to Vent...Pseudo is back for 2nd time;(

Sorry it's been awhile since my last post. The kids and I have had fun playing with their new Christmas toys:) I can't get enough of these kids :)

Thank you to everyone who has still been checking in on the blog! We DID end up hitting 40,000 hits before the end of 2012!! WOOHOO!!!

Ayla's medicine worked and her cough went away, thank God!! Lil' Chris never caught it, PRAISE THE LORD!!!! He has been cough free!! Everyone here is well, no coughs and no colds...knock on wood;) The flu has been going around like crazy at work. Please pray that none of us get it, esp Lil' Chris. It could put him in the hospital.

We had a FANTASTIC Christmas, New Year, and even got to play in the snow and go sledding!!! I posted pics and video's on fb. One of these days I'll try to find some time to upload some video's on One True Media again:) It's just very time consuming since this laptop is so slow. I've started so many video's, but then gave up b/c I get too frustrated and I don't want to break a window by throwing my laptop thru it;p LOL

Lil' Chris got his ski's that he asked Santa for, and Ayla got her Minnie Mouse dressed in Christmas PJ's that she asked Santa for:) Too funny:) Lil' Chris also got a new 3DS XL and lots of games for it. He LOVES playing it and even tried to sneak it into bed with him Christmas night:) LOL Ayla got a new big girl bed!! She loves it b/c it has a slide and a lil' playhouse underneath:) Now she has a Minnie room:)

They also got their own tablet, so now maybe Mommy can actually touch her iPad;) LOL They both LOVE it!! Ayla calls it a tabalet:) LOL When she wakes up in the morning, she comes quietly into our room and grabs the tablet or iPad off the charger and then either goes in her room or goes downstairs and plays quietly til we all wake up:) She is such a good girl!!

As for a CF Update on Lil' Chris...at the end of December, we went to the CF clinic to get a throat culture to see if the Pseudomonas is still there after doing his first round of TOBI...well, did we have fun on that trip!!! First off, my husband couldn't get that day off, so I had to take the 2 of them all by myself and I HATE driving up there! Second, we were only 10 minutes away and Ayla decided to pee in her pants...yeah...sooooo much fun!!! So of course I have no extra clothes b/c she has been potty trained for over a year! So I call the clinic and tell them I'm going to be late. Then I pull over and search in the GPS(thank God I had a GPS!!) for the nearest Walmart. I start driving and then I see a Kohl's closer than the Walmart, so I go there. 

So after that, we start heading back and the GPS can't find the stinkin clinic!! It kept taking me in circles!! I had just about had it, if you can imagine! Finally I find it and we get there and have the appointment and get his culture. I honestly contemplated just turning around and going home once Ayla peed, but I didn't. It's a good thing, b/c I told the nurse that he has been getting tummy aches and that his stool was oily once. So she called in the dr and she felt his tummy and could feel something. So she upped his enzymes to 4 or 5 instead of 3 every time he eats. He has been on 3 for a long time, maybe since he was 2, so about 3 1/5 years. My husband and I figured that's what they were going to do, we almost just started upping it ourselves. So he now gets 4, but if it's lots of cheese or something, then he gets 5. So far, he has been doing better with that.

So Lil' Chris got his culture by a new guy I think, b/c I had never met him before. Then as we were leaving, we passed some workers in the hallway that had a huge cart of toys and they told the kids to pick whatever toy they wanted:) Their faces lit up!! Ayla got a dr doll and Lil' Chris got a batman toy. They also got coloring books and markers from our fav nurse at the CF clinic, so it turned into a better day after that:)

That is until.....I didn't hear from them about the results and when I called, I find out that they "threw away" his culture!!! I was livid!!! Esp after all we went thru to get there!!! So we had to make another appt to go all the way back up to the cf clinic to get ANOTHER throat culture! I asked again if we could just get it done at his pediatrician, but the nurse said no, that the clinic does it "different"...idk, whatever at this point. 

So we go to the cf clinic on January 2nd and get another throat culture. Of course Nurse P was there and did the culture herself. She came in our lil' tiny room and goes right up in Lil' Chris' face while he is sitting on the table or whatever you call it, and she proceeds to open the stuff to do the throat culture. THEN she goes over to the counter and starts putting her gloves on and says "I'm gonna put a mask on b/c I'm fighting a nasty cold." I about got up and smacked her!! She was JUST in Lil' Chris' face with NO mask and touching the stuff that was going into his MOUTH without gloves!!! I couldn't believe it!! 

So she does the culture, then what does she do....she takes the mask OFF and proceeds to talk to us about how she is calling a meeting b/c they threw away the last one and blah blah blah....Seriously lady??? The room is like 4 x 4 and your gonna stand there SICK and talk to us with our CF son?!?! I was so shocked I couldn't even talk! I just tried to pretend like I was putting his coat on and tried covering his head until she left. I WAS FUMING MAD!!! I told my husband that if he gets sick from her, I was going to let her and the clinic have it!! 

Fortunately he didn't get sick. But I have started a list of all these things to put on the survey that they make us fill out each year. I'll let them have it on there for sure!! And if something like this happens again...I will not hold my tongue!! I will ask to speak to the director pronto!! And can you believe that they didn't even offer to validate parking?? I would've said no, but the offer would've been nice since they made us drive all the way up there for ANOTHER culture b/c THEY threw it out by mistake! So fed up right now!

Now onto even worse news...we finally got his culture result back and unfortunately he cultured Pseudomonas again:( :( :( He will be on Cipro and TOBI again. Not really sure where to go from here, since I got this news on my Voicemail AGAIN!!!! Seriously thinking about switching CF clinics after all of this. I may make some phone calls on my next day off. Honestly...if it's something this important...CALL ME AT WORK!!!! This is 2 times in a row I have found out that he had Pseudomonas from my voicemail!! Unbelievable! So now I have to take my whole 1/2 hour lunch break at work to make phone calls to find out how to get the TOBI, b/c I guess they changed it starting this new year and we can't get it at CVS now. Also, I have lots of questions for the CF Clinic, as you can imagine. If they would've called me back right away today, I could've done this, but now I have to work the next 2 days, so it's going to be hard to get all this done!!! ARGGGGG!!!

Anyways, thanks for letting me vent. This 2nd culture of Pseudo is baffling me. Is it his new school?? I know his teachers are very good about sanitizing his hands often. They even wear the sanitizers on there hip like I do! Is is from the Pulmozyme?? This is something new we started this year, so maybe the Pulmozyme has something to do with it?? IDK. It could be anything I guess. I just pray that this 2nd round of TOBI and Cipro knock it out so he doesn't have to do it every other month.

The weird thing is...he's not even coughing! But I guess that doesn't mean that those bad bacterias aren't still lurking around in his lungs doing bad things. Please pray we figure this out and that it doesn't lead to worse things. His next clinic appt is Feb 20th.

Thanks,
M 

CF Update / Ayla has a cough:(

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

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

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

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

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

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 Clinic Visit / Thirty-One & Alice Noble Fundraiser Results

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

Stacie M

Margo

Amanda

Samantha S

Barb

Rachel M

Oma

Samantha C

Andrea S

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

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

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

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

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

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

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

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

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

"Lil' Chris is our poster child for CF"

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

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

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

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

Marla

Steph W

Sarah D

Devin

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

Thanks, 

M

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

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

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


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


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


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


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


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


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


Thanks,
M

Annual CF Clinic Visit / CiCi's CF Fundraiser Results

Lil' Chris had his annual CF clinic visit on May 16th and he had a GREAT report! Lungs are CLEAR!! YEA!! For those who don't know, CFers go to a special CF clinic, usually at a Children's Hospital, every 3 months for a checkup. Then every year around their birthday, they have their annual visit, which is when they go over EVERYTHING!!! These visits usually are 2-4 hours long;( We have to prep for this visit by getting x-rays and blood work done beforehand. They said that his blood work looked GREAT!! The Dr. also said his x-rays looked GREAT too!! They aren't 100% clear in the pics below, but she said she didn't see any scarring yet! BIG YEA!!!!! Here are the pics from the past 5 years, one year was missed, not sure how that happened??....

5/21/08

6/16/10

3/16/11

4/4/12 First time standing up while taking x-ray

Click here to go to the post where he got his last x-rays taken standing up.

His weight went up from 41.2 to 43.8 and his height did too a little from 44.5 to 45 inches. His weight was in the 74th percentile(up from 66th last time, 3 months ago) and his height the 90th percentile(down a little from 92) and his BMI the 40th percentile(up from 20th percentile last time:) The doctors like CFers to be at the 50th percentile or higher for BMI, so this big jump is so nice to see!!!

The doctors made no changes to his meds, but they suggested we up his pressure to 5 instead of 4 on his vest for the first 20 minutes of his 30 minute treatment. We changed the setting on our Vest and he is handling it fine:)

Now that he is almost 5, every clinic visit(every 3 months) he will have to do a PFT(Pulmonary Function Test) which they will keep track of. Up until now, he has been practicing for it, but now they will keep it on record. Most kids can't even do it at age 4, they always are impressed with him:) He did a GREAT job and scored a 99 for his FEV and a 93 for his FEV1! Pretty good, but we want 100%!!! :) Next time...next time! You'll see in the video that he got one good one in the beginning, but he got tired after that. He's still learning. What he has to do is take a really deep breath and then blow out as hard and as long as he can. He's getting there:)

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He got a throat culture taken too. He impresses me every time when he doesn't cry or anything!!! I guess he is used to getting it done every 3 months now. It surprises me that he doesn't say things like, "I don't want to go to clinic, they will try to shove a thing down my throat!" He never complains, even though he knows it's coming! He just takes it like a man! :) That's my boy!!! I will let you know when I get the results from it. He didn't have a cough going into this visit, so I'm not expecting any bad bacterias, but you just never know with Cystic Fibrosis. That last antibiotic finally kicked out that wet cough he was having for what seemed like months! He coughs every now and then, but it's dry, so I'm not worried about it. I'm so glad that I pushed to get him on that antibiotic, b/c they fought me on it saying it was just allergies. Please pray the results come back clear or no new bad bacterias!!

So the doctor never ended up having him try the Pulmozyme for the first time in the doctors office like I was told. I guess that was just if we went with HTS instead of Pulmozyme, b/c some kids have reactions to HTS. My husband wanted to know if we could start it after vacation, and the dr saw no problem with that since it's only another month. I was kinda excited about getting started and going on vaca for the first time with it, but I guess it will be easier without it and that will make this our last vacation with no breathing treatments. Makes me sad when I think about it, but this Pulmozyme will be good for him. We want his lungs to be as healthy as they can be for when that CURE comes!!! Studies have shown fewer hospitalizations, lung infections, coughs, and antibiotics with the daily use of Pulmozyme, so I am ALL for that!!! I will post pics and videos when we do start it though:)

After our clinic visit, I had a CF fundraiser at CiCi's Pizza! BIG THANK YOU to my fellow Kohl's associates for helping out so that Kohl's would give a $500 grant!!

THANK YOU...

Jill P.

Kathleen S.

Jill S.

Laura T.

You girls are the BEST!!!

I was raffling off 2 tickets to an Indians game and we raised $170!!! Woot Woot!! Our winner of the raffle was our good supportive friends from church, Stephanie and Clay!!!! THANK YOU GUYS SO MUCH FOR YOUR AWESOME DONATION AND FOR COMING OUT TO SUPPORT US!!! They have also signed up to walk with us on June 9th at our Great Strides walk!! Stephanie has been posting her Great Strides page on Facebook and everything to help raise money!! We can't thank you enough Steph!! You'll be surprised as to how many friends and family will donate when you tell them about Lil' Chris!! Small amounts from each one adds up to a lot!!

So our total for the night including the raffle, the Kohl's grant, and the percentage from all the customers receipts was around $730!!! WOO HOO!!!! THAT'S AWESOME!! Special thanks to our neighbors Tiffany and Ryan and their kids for coming, and also Lil' Chris' teacher Ms. Carrie and her husband Justin for coming!! Thank you all for coming to support Lil' Chris and for your generous donations for A Cure 4 Lil' Chris and ALL who suffer from Cystic Fibrosis!! 

BIG thank you to everyone who donated that night at CiCi's!! Cystic Fibrosis is not funded by the government, so these fundraisers that us CF parents do are soooo important in finding that CURE!!!

My next CF Fundraiser will be at the Wooster CiCi's Pizza again on Tues May 29th from 5p-8p!! Raffle will be 2 tickets to an Indians game of your choice!!!

ALL are invited and please help me spread the word, either my word of mouth or by Facebook!!

Thanks again for everything!! Keep the prayers coming!!

M

PS. Garage Sale/CF Bake Sale Results coming soon:)

Annual Chest X-rays and Blood work-almost 5 yrs old

I talked to the CF clinic and we are extending his 5 days to 8 or 9 days of this Azithromycin to finish up the bottle since he still coughs every now and then. It's better, but not gone. They said after an oral antibiotic it should be completely gone, esp since we are going above and beyond with my 7 step treatment plan(check last post;)

Yesterday we took Lil' Chris to the CF clinic to get his annual chest x-ray and blood work done. He did such a GREAT JOB!! He was a little afraid of the needle...he was breathing heavy once he sat on my lap in the chair, but still did great!! After we got the x-rays, I asked if we could get a cd of all his x-rays of the past 4 years and they did it!!! I'll try to figure out how to put them on here if I can. They don't look much different from his first x-ray when he was one, but they aren't very clear either, so not sure what to think. I can't wait til our May 16th appt to ask the dr. I'm going to ask to see the x-ray there so she can go over it with us. They have never done that before, not sure why. I guess I'm gonna have to ask for everything;-) lol

Well, if I'm not on here before Easter, I hope you all have a very happy Easter!! :)
M

CF Update / CF Lungs vs Healthy Lungs

Just a quick update on Lil' Chris...He finished his 3 weeks of antibiotic, Bactrim, a few weeks ago and for the first couple of days his cough was gone! I was soooo excited!! Then he went back to school and came back home with a cough again;( Ughhhhhhh It was sounding wet, but now it seems to be getting better :) PRAISE THE LORD!!! I'm praying for no more coughs before his next CF clinic appt in May.

I called the CF clinic the other day about getting the nebulizer machine for the Pulmozyme or HTS(we still have not agreed on which one to do). We are going to start it after his next CF clinic appt so they can show us how to use it and clean it properly. They said that some have reactions to it, so they like to do the first treatment at the clinic....which is more than fine with me since I have never used one before. Growing up, me and my sisters were pretty healthy, and the only sicknesses that I can remember were strep throat and my sister had to get tubes in her ears....that's it, other than the common colds!!! Thank You Lord!!!

I know these nebs won't make his cough go away or make him never get another cough again....but it will hopefully help him cough up the mucus and get it out rather than staying in his lungs for more bad bacterias to latch onto it causing more problems. I just pray that he doesn't get any scarring in his lungs before we get a chance to start it. Hopefully this new nebulized med will help keep scarring at bay. If we can keep his lungs clear until a CURE is found...then we are golden! If not, then the scarring and irreversible lung damage will stay with him and affect him even if.....I'm sorry.....WHEN a CURE is found!!!

Here is a pic of a CF kids lungs with irreversible lung damage...you can see how cloudy it looks, that's scarring.
Here is a pic of healthy lungs that are clear...
We are so close to a CURE and we can't let Lil' Chris' lungs get like that first pic! We need that CURE NOW before it's too late!! That's why it's soooo important to donate today to help save not only Lil' Chris' lungs, but all 30,000 in the US and 70,000 children and young adults worldwide!! Click here to donate today!!

Thanks so much to all who have already donated!!! It means the world to us!!!
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