Our old CF Commercial that plays on MCTV. Still working on this years.
Friday, April 30, 2010
RED for Conner and Eva!!!
Thursday, April 29, 2010
2 Days Left!! / What Lil' Chris is doing for a CURE:)
Tuesday, April 27, 2010
CF Commercial / Cross-contamination / Some Awesome People:)
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
Friday, April 23, 2010
Cool Invention for Nebs:)
Thursday, April 22, 2010
Another Successful CF Fundraiser!!! YEA!!!
Jean
And here is my hubby and his friend Spencer.....LOL
Need I say more??? LOL
Tonight's Fundraiser is Dedicated to Conner!!
Join us tonight between 4pm and 8pm at the Wooster CiCi's Pizza for Conner!! I bought red ribbon the other day so we can honor him at our walk next weekend, but I'm not sure where my hubby put it. Hopefully I can find it and then wear it tonight for the fundraiser:)
"Praying for you Conner man!!!"
M
CiCi's Pizza Fundraiser TONIGHT 4pm to 8pm in Wooster!!
Not sure what to make for dinner or don't have enough time to make anything....well come on down and join us at CiCi's and have some GREAT food for a GREAT cause!!!
There will be a raffle for a basket of Bath & Body Works products, and for the first time...I will be selling Cystic Fibrosis bracelets!! (Thanks Oma;) There are 2 different kinds...one says "Great Strides" and the other says "Breathe" and there are adult sizes and kid sizes. They both say "www.cff.org" on one side. Here are some pics of them...
Hope to see you tonight!! Please spread the word:)
M
PS. Unfortunately Lil' Chris woke up with a runny nose today;-(
Wednesday, April 21, 2010
New Vest Questions / Update / Upcoming Fundraisers
To answer CF Momma's question about the new Vest having the air holes like his old Vest that blow out cold air:
No, it doesn't blow out the cold air, b/c it doesn't have those little air holes. We were told when he first got his, that only the little ones have the air holes. I forget why, something about the kids being so little. Maybe it's not as hard on them or something. I can't believe what a difference it makes in the noise though! I guess I just never realized that most of the noise was coming from the air blowing out of those little air holes! I just thought it was the machine I guess! I used to have to turn up the TV real loud so he could hear it, but not anymore:) YEA!!
Another question I had was if it was "harder" on him. It might be a little bit, but he doesn't seem to mind. Plus, it's probably better for him if it is harder!
Is this Vest for all ages?? Yes, I believe it is, except for the little kiddos. It starts in a size Medium. It comes in blue, pink, and black. We opted for the blue one since he is a boy and his old one was black:) *****UPDATE: YES THEY DO HAVE THE CHILD SIZE, IF YOU ALREADY HAVE A VEST, JUST CALL THE COMPANY AND ORDER THE NEW ONE AND THEY WILL SEND IT OUT TO YOU...THANKS CF MAMMA FOR CORRECTING ME;)*****
Only one of the hoses has popped of once that I know of. My hubby has been doing most of the treatments, b/c I was sick. They haven't popped off at all for me yet...other than in the video on the last post;-) lol
As for a little update, my cold is mostly gone, but my voice still sounds weird;( Ayla's nose started running yesterday:( and Lil' Chris and big Chris have been doing fine so far!! Please pray that Lil' Chris doesn't get sick. I wore my mask the whole time I was sick last week, so I'm not sure how Ayla even got sick! Stinks! We've been playing the game "Keep the Kids Apart." Oh what a fun game...yeah right! It's so hard!! They are used to playing together and it breaks my heart to have to tell Lil' Chris "Sorry buddy, but Ayla is sick. So you have to stay in this room while Ayla plays in the other room, so that YOU don't get sick too." He's usually ok with it when I explain it to him, but still......I just hate the fact that I HAVE to do it and that I HAVE to sanitize my hands between touching each kid. I'm sure every household goes through this to some extent. We just have to be extra careful, that's all. He's been doing so great, we just want to keep it that way:)
At 1:00pm today, me and 2 other local CF moms are getting together to get our picture taken at our walk site for the local newspaper. They did this last year too and it was a great article that they did. I'm sure it's going to be just as great this year too:)
This Thursday is my next CiCi's fundraiser for Cystic Fibrosis. If you're in town, come and enjoy some great pizza for a GREAT cause this Thurs at the Wooster CiCi's between 4pm and 8pm:) A percentage of each bill will go towards a cure for CF if they put their receipt in the jar by the register. We will have a raffle, and for the first time, I will be selling CF bracelets too, thanks to my Mother-in-law for getting them and sending them to me:)
So far, I have 4 Kohl's associates signed up for this event, so I just need one more and then we will get a $500 grant from Kohl's:) YEA!! We haven't missed an event yet, and I only have 3 more set up...
- Thurs 4/22 at CiCi's in Wooster from 4-8pm
- Saturday 5/1 at Hewitt Cowles Pavilion for our walk. Check-in is at 9am and the walk begins at 10am. There are a BUNCH of Kohl's associates signed up for this one:) Thanks everyone:)
- Thurs 5/27 at CiCi's in Wooster from 4-8pm
I'm also having a fundraiser at Applebee's in Wooster on Wednesday May 12th between 4pm-9pm. You have to have the flyer though. I'll be posting the flyer closer to the date:) This one won't be a Kohl's A-Team event though. There is just nothing for the people to do. I don't think they let us walk around to each table and have raffles, so I may not even be there the whole time. I may just go for dinner with the family when my hubby gets done work. IDK, we'll see:)
I think after all these fundraisers I may take a break for a while. I've been doing 1, sometimes 2, EACH month since January. I'm beat!!! Not to mention all the planning for the walk. Maybe I'll do more fundraisers in the Fall:)
I hope to see you Thurs!!
M
PS. Some great things going on in our neighborhood...I'll share soon:)
Friday, April 16, 2010
New Blue Vest Pics & Video :)
After the mess he made of the living room with all those tissues, he refused to pick them all up, so I told him he would have to take a nap early and THEN he can open his new Vest. So, he took a nap and when I brought him down, he gave me this puppy dog face and said "Open present now??" At first I thought "what present?" but then I realized he meant the new Vest box;-) So after I cleaned up all the tissues MYSELF while he was napping (clear throat;)...here is his excitement of opening his new Vest....(you can tell they are siblings, b/c they both are engrossed with the TV at the same time;) You'll also see that it comes in 2 parts. The black one is the part that goes inside the blue one...it's called the bladder. The black one is what fills up with air. The blue one is AWESOME, b/c it is machine washable!! YEA!!! It's about time they figured that one out...would have been more helpful when he was younger and throwing up all the time...oh well, at least new CF moms and dads will have them now for their lil' CFers;-)
The hoses connect differently too on this one. Instead of twisting them onto the outside, they get twisted into the little connections. Not sure if this is going to help with them popping off easily or not. You WILL see one pop off towards the end of the montage though. If you have speakers, you can probably hear that he likes it in the beginning(I love his face when I put it on for the first time;) but towards the end he just wants to take it off. He ACTUALLY says..."Ayla put it on??" This was a first for me and kinda took me back for a second!! I was kinda at a loss for words, b/c he had never said this before and I didn't know what to say to him! I think I just said that Ayla doesn't need to put it on or something like that. I think we may have to have a talk soon, now that Ayla is getting bigger and he sees her not doing what he has to do. I've been dreading this moment for awhile now. We were so wrapped up with the new Vest that I didn't really get a chance to explain it to him, but I will have to soon. I just hope that it doesn't affect him wanting to do his Vest or pills anymore. I'M SCARED!! But I'm sure it will be fine, I'm just dreading it. Anyway, this subject could be a whole new post itself;-) lol
So, without further ado, meet our new blue Vest...(oh, one more thing;) I forgot to mention that it is really quiet. Our last one had air holes that made noise, but this one doesn't...and sorry about my voice in the video's, but I have a cold and I was wearing my hospital mask;) lol
BTW, we got his throat culture back and he grew something new called Streptococcus Pneumoniae. They said no changes need to be made. It made me a little nervous seeing Pneumoniae in it, but thanks to Piper on CysticLife, she put my mind at ease:) Thanks Piper:)
Also, our CF commercial is now playing all over town...YEA!! I've had people at work tell me that they saw it:) Only 2 more weeks until our walk on May 1st!! YEA!!
Right now, Lil' Chris just said the cutest thing...He was looking out the window at the groundhog that lives under our shed, and he said "Hi groundhog! What's your name? Are you hungry? Are you ok? You got a tail, why? Where are you going? Go night night groundhog." I just LOVE this kid =) He puts a smile on my face everyday:)
M
Thursday, April 15, 2010
New Vest / Monkey Joe's CF Fundraiser is TONIGHT in NC!!!
A WHOLE box of tissues ALL OVER THE FLOOR!!! ARGGGGGGG!!!! But, it could have been worse;) At least it's easy to clean up and wasn't something that stained the floor;-) LOL It's my own fault though...I have a cold right now and I had that tissue box on the couch and forgot to put it up when I left the room and told him to play. At least it kept him quiet for awhile and kept him far away from me and my germs;-) LOL
Needless to say, I am making him wait to open his new blue Vest, b/c he knows better!! I'll post pics of the new Vest soon when I let him open it;-)
Family Fun Night!
Join us for a night of FUN, FUN, FUN!!!
to benefit the
Cystic Fibrosis Foundation’s
Great Strides for CF Walk
“A Cure for Lil’ Chris” Team
Where: Monkey Joes – 601 N. Polk Street Pineville, NC (704) 889-1211
When: Thursday, April 15th, 4:00pm-8:00 pm (Drop in anytime!!)
Cost: $6.00 per child
Tons of giveaways... including a FREE Family Fun Pack!!
For participation over 30 students, win a FREE Birthday Party
For 100+ students, win 2 FREE Birthday Parties!
$2.00 Pizza, $2.00 Nachos, $2.00 Soft Pretzels
Remember to wear socks!!!
*FREE WI-FI
Wednesday, April 14, 2010
Monkey Joe's CF Fundraiser 4/15 in NC
Family Fun Night!
Join us for a night of FUN, FUN, FUN!!!
to benefit the
Cystic Fibrosis Foundation’s
Great Strides for CF Walk
“A Cure for Lil’ Chris” Team
Where: Monkey Joes – 601 N. Polk Street Pineville, NC (704) 889-1211
When: Thursday, April 15th, 4:00pm-8:00 pm (Drop in anytime!!)
Cost: $6.00 per child
Tons of giveaways... including a FREE Family Fun Pack!!
For participation over 30 students, win a FREE Birthday Party
For 100+ students, win 2 FREE Birthday Parties!
$2.00 Pizza, $2.00 Nachos, $2.00 Soft Pretzels
Remember to wear socks!!!
*FREE WI-FI
Tuesday, April 13, 2010
Conner's Final Birthday at only 7 years old
M
PS. If you haven't already donated, click here to donate today...THESE PRECIOUS LITTLE LIVES NEED YOUR HELP SOONER, RATHER THAN LATER!!
Saturday, April 10, 2010
Annual Clinic Visit Paperwork
I have to fill out a "Parent Questionnaire For Annual Review," and then a "Food Questionnaire." They are a pain to fill out!! The food questionnaire is 6 pages long, asking everything under the sun about what he eats!! Lil' Chris DOESN'T EAT ANYTHING!!! I feel like the worst mother EVER!! I have to check "Never or less than once per month" on just about EVERYTHING!! They must think I'm the worst when they review it :( I can't force him to eat foods or try new things...trust me I've tried! Hopefully the visit will go smooth and they won't recommend him seeing a speech therapist again on how to learn how to eat different foods. He knows how, he's just stubborn like his dad...I mean me;-) LOL
When I'm done, I have to make an appt. to get his chest x-ray done and blood work done before our annual visit so they can review the results before our visit and then go over it with us. I hate it that he has to go through this EVERY year for the rest of his life!! Poor kid. This is nothing though...when he turns 6 he will have to also do a PFT(Pulmonary Function Test) and an Exercise Test, when he is 10 he will have to add a DEXA Scan(bone density test that looks at bone health), and an Oral Glucose Tolerance Test to screen for CF related diabetes. Just crazy what all these CFers have to go through when they get older. It is a progressive disease though! We knew that from the beginning.
I probably sound very grumpy, but I'm not. It's just......all this stuff is a reminder that he has CF. CF moms, do you know what I mean? It's almost like you get into your routine of all the daily meds, Vest treatments, extra calorie foods, and even the quarterly CF clinic visits...that you almost forget about CF, b/c you are so used to it all! But then when you get this packet in the mail once a year....it's like a slap in the face!! It's a reminder that your kid isn't like every other kid. It's like the clinic is saying to you "Hey, don't forget...your kid DOES have Cystic Fibrosis, a DEADLY disease, and we need to keep a close eye on him!!" Wow, I do sound grumpy;) LOL I just hate the reminder, I guess. We try to live as normal as possible, and not let CF control what we do and when we do it.
I have to say, all these tests, paperwork, and annual clinic visits are great though...they help the doctors to stay on top of the disease. I don't want to think about what CF would be like without them!
M
PS. Lil' Chris is doing GREAT!! No colds or coughs!! Hooray!! Sorry for sounding so grumpy today;)
Saturday, April 3, 2010
Monkey Joe's CF Fundraiser April 15th in NC! Looks Like FUN!!!
Family Fun Night!
Join us for a night of FUN, FUN, FUN!!!
to benefit the
Cystic Fibrosis Foundation’s
Great Strides for CF Walk
“A Cure for Lil’ Chris” Team
Where: Monkey Joes – 601 N. Polk Street Pineville, NC (704) 889-1211
When: Thursday, April 15th, 4:00pm-8:00 pm (Drop in anytime!!)
Cost: $6.00 per child
Tons of giveaways... including a FREE Family Fun Pack!!
For participation over 30 students, win a FREE Birthday Party
For 100+ students, win 2 FREE Birthday Parties!
$2.00 Pizza, $2.00 Nachos, $2.00 Soft Pretzels
Remember to wear socks!!!
*FREE WI-FI