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!!!
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:)
Posts
3 comments:
I did see your picture in the paper tonight :) Good luck with the walk on Sat!!
It doesn't make you bad. It makes you informed & concerned. I don't let Victoria around other CFers if I can help it. Don't change. Nor feel the need to apologize or feel bad for trying to keep him as safe & healthy as you can.
I agree we all have to do what is best for our kids. People don't understand for example why I don't let Daniel go to the fair. It is what we think is best for him. I really think our kids will under- stand when they get older. I never want to have to look at Daniel and say I didn't do the best I could. I saw Heather today picking up chips for the Canton walk. See says hi! The change collection is going well at St. Mary's, I am sure we will hit our goal for $300. See you Saturday. I am praying for nice weather. Mary
Post a Comment