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Thursday, June 30, 2011

Great CF Fundraiser Night!!

Another GREAT CF Fundraiser tonight at CiCi's Pizza!!! Thank You to all who came and to all who donated!! Thank you to my awesome neighbors for coming out and supporting Lil' Chris...

Carrie and Gideon

Rachel, Seth, Brayden, and Jordan


BIG THANKS to my Kohl's girls for helping us raise $500 tonight from Kohl's...

Esther

Kathleen

Sharon

Karen R


Thank you Sharon for always inviting your family to come too:) Thanks Sharon's family for always willing to come and support CF!!! :)


Tonight's total was about $700!!! WooHoo!!!

Wednesday, June 29, 2011

CF Fundraiser Thurs 6/30 5-8p at CiCi's

Join us Thurs 6/30 between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 tickets to an Indians game of your choice in August or September!!!


We raised $230 last time with this raffle, so hopefully we will have another GREAT night!!!



PLEASE SPREAD THE WORD!!!



Special thanks my awesome Kohl's team for signing up to help out...


Esther


Kathleen


Sharon


Karen R


Thank You Girls!!! Your support means sooooo much!!!!



Friday, June 24, 2011

Culture Result / Missing Connerman / CF Fundraiser this Thurs

I finally got Lil' Chris' throat culture result from our last visit on 5/18...for some reason MyChart was not working properly, and it just said "See below" but there was nothing below. When I sent a message about it, the nurse said that they have been having problems with the site. Has anyone else noticed this?? I hope they fix it soon, b/c we all sit on pins and needles for that report to come back!

Anyway, he cultured Staphylococcus Areus Sensitive to Oxycillin(MSSA). This is what he seems to always culture now;( I was hoping for a "normal" result this time since he hasn't had one in a very long time. Oh well, at least it's not something to worry about they say! Praise the Lord for that!!

I wanted to share a link with you to Conner's mom's blog. If you remember, I wrote about Conner passing away 1 year ago today. He was only 7 years old and had CF. In his short time on earth, he touched sooooo many lives in the CF world!! We even did a red craft at our walk last year b/c that was his favorite color. So many around the world are wearing red today in honor of him, and are changing their profile pics on Facebook to something red. He will truly be missed by many. Love Love Love you Connerman!!! http://notsobrightandshiny.blogspot.com/


Don't forget....

this Thurs June 30th from 5p-8p I will be at CiCi's Pizza in Wooster for "A Cure 4 Lil' Chris" and ALL who suffer from Cystic Fibrosis!! Come on out and support Lil' Chris and Cystic Fibrosis...don't forget to bring the whole family, and please spread the word!!!! AWARENESS IS KEY TO A CURE, AND WE MUST FIND A CURE SOON!!!!

Sunday, June 19, 2011

Fantastic Father's Day!!

For Father's Day, we went to the Akron Aero's Baseball game! YEA!! It was so much fun and there was tons of stuff for the kids to do!! It was the first time for all of us to go to this field. It was Lil' Chris and Ayla's first time ever to a baseball game!! YEA!! It was kinda special to us, since this is the field that we always see from our CF clinic room when he goes every 3 months!

Lil' Chris....just like his Daddy;o LOL!!


Having a catch with Daddy on the field before the game started...



I just had to take a pic of them in front of this sign;-) LOL! That's the hospital that he goes to every 3 months and Kohl's is where I work:-) LOL


Ayla did not want her pic taken, can you tell??


Got his baseball autographed:)




HAPPY FATHER'S DAY




TO ALL THE DAD'S OUT THERE OR DAD'S TO BE;-)




SPECIAL SHOUT OUT TO ALL THE FANTASTIC CF DAD'S:-)

Friday, June 17, 2011

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

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

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

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

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

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

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

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

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

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

Monday, June 13, 2011

CF Fundraiser Tonight at CiCi's Pizza 5-8pm

Join us tonight between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 free tickets to an Indians game of your choice!!!


Special "thank you" to my fellow Kohl's associates... Jill, Rebecca, Sharon, and Patty for volunteering their time tonight to help out so that Cystic Fibrosis will get another $500 grant from Kohl's!!!

YEA!! THANK YOU GIRLS AND THANK YOU KOHL'S:)


This CF fundraiser will put us at $3,000 raised from Kohl's alone this year!!! WOW!! 4 more events and we will be at our goal of $5,000!! WooHoo!!! I've got some pretty awesome Kohl's associates, don't I :-)

Saturday, June 11, 2011

900 Hours on Vest / Wet Cough / Clinical Study on DF508





When we were at Disney, Lil' Chris reached the 900 hour mark on his Vest!! Way to Go Lil' Buddy!!! Also....he hit a milestone thanks to his cousin R! He can now unbuckle his Vest all by himself!!! YEA!!! Now he doesn't have to undo the velcro anymore and make it so it doesn't stick. Anyone with this Vest would know what I mean;-) lol


When we came back from our Disney trip, of course we all got sick ;( It was actually the day after Memorial Day. Big Chris, Ayla, and myself all caught a cold and had runny noses. Ayla had a cough too. Lil' Chris woke up that morning at 6am throwing up until about 10:30am off and on. We don't think he had any soy protein, but it seemed like it. Hopefully he's not allergic to something else too.





Anyway, he had a slight fever that day and just hung out on the couch for a couple of days(he's sleeping on the couch in the pic above...which NEVER usually happens), but no more throwing up. He didn't eat much either, but he would drink so that was good. After those couple of days he was fine!! He still has not caught our colds which is GREAT, but of course he woke up on his birthday with a weird sounding cough. Then he had a bad wet cough the whole car trip to Cedar Point. We almost turned around. Once we got to Cedar Point and he started going on the rides, he didn't cough much anymore:) Since then, he has been coughing off and on... still a wet cough. The last 2 mornings he has woken up early coughing a lot. Once he got up and moved around, he stopped coughing so much...just off and on again. I left a message on MyChart with the CF clinic letting them know that I would keep an eye on him this weekend and if it gets worse I'll call them on Monday. Meantime, we'll do more Vest treatments and Albuterol if he needs it. Please pray it gets better so he doesn't need an antibiotic. I'll keep you updated.




On a good note, there has been some more promising results in some of the clinical studies that could help Lil' Chris since he is a double Delta F508, the most common CF gene!! This could be HUGE for CFers!! Please pray this is the CURE or more CONTROL of CF we have been waiting for!! Click here for the whole article or read below....

Phase 2 Study of Two Potential CF Therapies — VX-770 and VX-809 — Shows Promising Results in Patients with Most Common Mutation

June 9, 2011

Vertex Pharmaceuticals Incorporated and the Cystic Fibrosis Foundation today announced promising results from an ongoing Phase 2 study evaluating combinations of VX-770 and VX-809, potential medicines designed to treat the defective protein that causes cystic fibrosis.

The study enrolled 62 people with two copies of the most common CF mutation, known as Delta F508. The trial lasted three weeks. Participants took VX-809 for two weeks, and VX-809 and VX-770 together for a third week.

Patients who took the drug regimen showed a positive change in sweat chloride levels. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The findings suggest that VX-809 and VX-770 together improve function of the defective CF protein, known as CFTR.

“The results of this study represent a milestone in our efforts to expand the use of small molecules to attack the root cause of cystic fibrosis in those with the most common defect,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “These data, while early, provide important new information that validates our approach and supports continued study of a combination-therapy approach to treating the basic defect of cystic fibrosis.”

The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

These positive results support further testing of VX-770 and VX-809 as a combination therapy. Vertex plans to initiate the second part of this Phase 2 study in the fourth quarter of 2011.

In people with the Delta F508 mutation, the defective protein does not move to its proper place at the cell surface. VX-809 is designed to help the protein reach the cell surface, while VX-770 aims to help the protein function more normally once it is at the cell surface.

The defective protein creates a cascade of symptoms, including a buildup of mucus in the airways and other complications that lead to lung damage and ultimately premature death.

The CF Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. In the 1950s, children with CF usually died before reaching elementary school. Today, people with CF live into their 30s and beyond.

Monday, June 6, 2011

HAPPY 4th BIRTHDAY, LIL' CHRIS!!!!!


I've got soooo many things to share on the blog right now, but no time....today is all about my lil' boy:) 4 years ago today I went into labor and gave birth to my first and only son, Lil' Chris! What joy he has brought into our lives!!!



HAPPY 4TH BIRTHDAY


LIL' CHRIS!!!!!



WE LOVE YOU!!!!




LOVE,


MOMMY, DADDY, & AYLA:)


We took Lil' Chris to Disney for his birthday a week ago(I'll share more pics and video's soon, sorry I haven't had time), but today is his actual birthday!! So we are taking him to Cedar Point to celebrate the day:) YEA!! Cedar Point is a HUGE amusement park and tons of fun!!!


When we were at Disney, it was Goofy's birthday too:)...














This next pic made the whole trip worth it! All the money, the long drive, the heat...everything! It's like his expression is saying...




"Wow, I can't believe I'm meeting Mickey Mouse!!!!!!!!!"



Friday, June 3, 2011

Garage Sale / Bake Sale for Cystic Fibrosis Sat 6/4 at 9am



Tomorrow, Sat 6/4, our development is having it's annual Community Garage Sale and 2nd Annual Bake Sale for Cystic Fibrosis:) YEA!!


It raised a lot of money last year and there are even more neighbors doing it this year!! YEA!! I'm overwhelmed by the love and support we get from all our wonderful neighbors who love and adore Lil' Chris:) Not only do they walk and donate for a cure, but they also put their time and effort into an already stressful day by baking and selling goodies for a CURE for Lil' Chris and ALL who suffer from Cystic Fibrosis!! We can't thank them all enough!!



"THANK YOU WONDERFUL NEIGHBORS!!! YOU GUYS ALL ARE AWESOME AND HAVE SUCH GREAT HEARTS!!"


Can't make it to the garage sale but would like to donate??? No problem, just Click here to help make a difference in the lives of those suffering from CF:)


Thanks everyone,

M

PS. Please pray it doesn't rain tomorrow and we have a good turnout;) I'll let you know how it goes:)