Thursday, June 30, 2011
Wednesday, June 29, 2011
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...
Thank You Girls!!! Your support means sooooo much!!!!
Friday, June 24, 2011
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/
Sunday, June 19, 2011
Friday, June 17, 2011
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!!
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
Saturday, June 11, 2011
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.
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
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!!!
When we were at Disney, it was Goofy's birthday too:)...