4 Year Annual CF Clinic Visit

Lil' Chris had his 3 hour 4 year annual CF clinic visit today and it went GREAT!!!! His weight was 38.6 up from 37.3 and his height was 42 inches up from 40 3/4 and his BMI was 47% down from 50%. They didn't seemed to worried about it only being 47%. They usually want CFers to be above 50%. They said he had a growth spurt!! I'm just glad he can go on the 42 inch rides at Disney now:) LOL

All 8 different nurses/dr's that we saw today said to "keep up the good work and that he is doing GREAT!!!" Gotta LOVE hearing that:) They made no changes to any of his meds since he is doing so well. YEA!! They did take a throat culture test, so now it's just the waiting game;( Why must they torture us so long?!?! Please pray it comes back "normal." I'll let you know when I find out.

A few tips that we took away from todays visit:

1. It's common for CFers to get thirsty when doing the Vest. If you put your hand in front of their mouth, you can feel the air being forced out, so all that air may make them thirsty.

2. You can get a letter from your CF clinic for places like Disney to get in front of the lines or in the Fast Pass line for free so that they don't dehydrate waiting in the long lines in the heat. We got our letter today!! YEA!! I think it's for up to 6 people too:) Thanks Chrisy To Jobe for mentioning that one to me;)

3. New high calorie drink to try, see pic above. He drank 1/4 of one there, but we'll see if he will drink it at home.

4. To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $775!!! WooHoo!! You get $50 just for joining and $25 every 6 months!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!! Thanks:)

5. Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Well, I've got a TON of things to do, so I'll write more when I have time:) Thanks for the 28,000 hits!!

M

CF Annual Clinic Visit Tomorrow!!

CF Annual clinic visit tomorrow morning. I'm a little worried about his weight. He seems to be stuck on 38 lbs whenever he jumps on the scale here...seems like it's been a YEAR!!! Ughhhh;( I wish he would just EAT!!! It's so hard to see other kids younger than him eat like a champ, or Ayla scarf down food like she hasn't eaten in days... when Lil' Chris is the one who needs all the extra calories!!!! Frustrating!!! I keep praying his appetite will pick up.

Other than the weight, he is doing so well that I'm not worried about the rest, except of course the dreaded throat culture result;-( I pray it's "normal" or nothing to worry about. I'm soooooo glad he never got a bad cough after that last cold like he usually does!!!

Well, I'll let you know how the visit goes!!
M
PS. I'll try to catch up on my "31 days of CF" on FB soon, I promise! Even if it takes me to December, I'll finish it!!! LOL ;-)

2nd Annual Great Strides Walk Video 5/14/11 :)

Make an on-line slide show at www.OneTrueMedia.com

This past Saturday was our Great Strides Walk for a Cure for Cystic Fibrosis and it was AWESOME!! The grass was wet, but it didn't rain at all the whole walk:) YEA!! As you can see above, I got a lot of great pics:) I think I already know which ones I'm going to use for the commercial for next year;-) LOL :)

Once again, I just wanted to thank all of our sponsors who truly made the day a success...
Panera Bread
Domino's
McDonald's
Frito Lays
Culligans
Buehler's
Speedway
Pat Catan's
Wooster Police
Clear Picture
The Daily Record

Woo's Brew's

Bowman Beverage

Ida Sue School for the Pavilion

BIG Thank You to my fellow Kohl's Associates for helping out by handing out t-shirts, tickets, food, and for walking:)...

Amy K

Barb

Jill

Missy

Mandi

Roberta

Aaron

Karen

Kathleen

I want to thank my AWESOME neighbors who came out to support us again this year and for their awesome donations too:)...

The Butlers

Carrie and Gideon

John

Rachel, Brayden, & Jordan

Sean & Mike

Thank you Amy K, Oma & Opa, Sean & Michelle, Steph & Greg, Danielle & Steve, Deb, and Kevin & Jess for all your collected donations and support!! It really means a lot!!

Thank you Opa for walking and Oma for babysitting Lil' Chris and Ayla at home because of the risk of cross-contamination.

Thank you to all our raffle donors and especially Stacy A. from Kohl's who put together about 5 baskets of Bath and Body Works products and Amy for donating the product:)

Thank you Pro skate boarder, Doug Brown, for donating an autographed poster. That was awesome and one of the lil' CFers, Jack, won it:)

BIG thank you to Erica and her husband for all the hard work of set up and tear down and making everything go smoothly:) You guys rock!!

Thank you to ALL who came out to support Cystic Fibrosis!! We had about 70-75 people and raised about $7,500 and by the end of Summer we should be at about $15,000!!! This is up from $13,000 last year:) WooHoo!!!!!!

Special thanks to my sister D and my SIL Steph for leading a Great Strides team for "A Cure 4 Lil' Chris" in their states!!! You guys raised a ton of money, you and your donors are SUPER AWESOME!!

Our walks would not have been a success without all of you guys!! THANK YOU, THANK YOU, THANK YOU TO ALL WHO WALKED, DONATED MONEY/RAFFLE PRIZES, SPONSORED, AND ALL WHO DONATED ONLINE OR SENT CHECKS IN!!! WE THANK YOU FROM THE BOTTOM OF OUR HEARTS!!! WE CAN'T THANK YOU ALL ENOUGH!!

For those who didn't get a chance to donate yet, but would like to...click this link http://www.cff.org/Great_Strides/LilChrisChris6765 we will be collecting donations for this years walk until the end of the Summer:)

M

PS. As for an update on Lil' Chris... he is doing GREAT!! Praise God he did not end up with a bad cough after that last cold he had!! YEA!!!

Join us today for our Walk for a Cure for CF!!!

About to leave for our 2nd Annual Walk for a Cure for Cystic Fibrosis!!! It's supposed to rain and everything is wet right now but not raining, so hopefully it won't rain again for the next 5 or 6 hours:)

If you would like to donate or walk still, it's not too late:) Click this link ... http://www.cff.org/Great_Strides/LilChrisChris6765

Hope to see you there!!! It's going to be sooooo much fun even if it does rain:)

Good luck to all the other Great Strides walks going on today around the country!! Thank you to my sister D and her family, and my SIL Steph and her family for walking in their states:) We love you guys!!!
M

Walk for "A Cure 4 Lil' Chris" / Thank You Sponsors!

Exactly one week from today, we will be walking for "A Cure 4 Lil' Chris" at the Hewitt Cowles Pavilion by Ida Sue School at 9am!!! It's not too late to sign up to walk or to sponsor me!! Click this link to get started...http://www.cff.org/Great_Strides/LilChrisChris6765 or you can mail me a check made out to Cystic Fibrosis Foundation, just put "A Cure 4 Lil' Chris" in the memo:)

It's going to be a lot of FUN!!! There will be...

• Bagels from Panera Bread



• Pizza from Domino's



• Happy Meals from McDonald's



• Chips from Frito Lays



• Fruit from Buehler's



• Cookies/cup cakes made by Alma(fellow CF mom:) and her friends



• Water from Culligans



• Ice provided by Speedway

There will also be some fun entertainment for the kids, so bring the whole family:)...

• Wooster Fire truck for the kids to explore



• Wooster Police car for the kids to explore



• Craft table provided by Pat Catan's



• CF temporary tattoo's



• CF Frisbee's



• They can even ride their bikes on the beautiful walking path:)

If you bring at least $100 in sponsors, you will receive a FREE Great Strides T-shirt!! :)

Special thanks to Clear Picture for airing our CF commercial about our Great Strides Walk!! I will be taking pictures at this years walk for next years commercial;) Thanks to the Daily Record for the beautiful article about CF and the walk too!! Thanks so much for helping spread the word about Cystic Fibrosis!!!

Thank you to those who have sponsored me so far, in no particular order...

Aunt Mar

My Daddy

Uncle Joe and Aunt Diana

Elizabeth & David

Gram D

Aunt Caroline

Carol S

Al S.

Audra C

My mom

Katy & Joe U

CiCi's Pizza

Also, special thanks to my sister D, my SIL Steph, Oma & Opa, and Amy K for raising money for A CURE for Lil' Chris too with their own Great Strides page and their own walks in NJ and NC!! THANK YOU TO ALL WHO SPONSORED THEM!!!

BIG THANKS to my fellow Kohl's associates for volunteering their time to go to FOUR "Associates In Action" events at CiCi's Pizza so far and raising $2,000!!! YEA!! Our goal is to raise $5,000 by the end of Summer:) After the walk next Sat, we will be 1/2 way there:) Gotta LOVE KOHL'S and their AWESOME employee's;)!!!

I hope everyone has a very Happy Mother's Day, esp my fellow CF mamma's...squeeze those kids a little bit tighter, even if they don't want it...they have to, it's YOUR DAY:)!!!

M

PS. May is CF awareness month, so I've been doing "31 day's of CF" on Facebook if anyone wants to follow. I post a little bit about CF everyday:) I may post them all on here eventually:)

DISNEY!!! YEA!!!

Well, it's official!!! WE ARE GOING TO DISNEY!!!!! YEA!!!!!!! I just booked it!! :)

It may hurt us in the long run since we can't really afford it right now, but it's something I've ALWAYS wanted to take Lil' Chris to. Ever since he was diagnosed, I've wanted to take him to Disney. I never got to enjoy it as a kid, but I DID get to enjoy it as an adult numerous times now (starting with our Honeymoon;-)
With Cystic Fibrosis, you just never know when it may turn for the worse. Even though Lil' Chris is so "healthy" right now, it could all change in a blink of an eye. I've seen other CF kids doing just fine and then they catch a bad bacteria in their lungs and within 6 months to 1 year they are gone. I always thought to myself...if that were to ever happen to Lil' Chris before I got to take him to Disney, I would NEVER forgive myself. Well, now I don't have to worry anymore...well, not about Disney that is;) He is healthy and doing well, and we are going to enjoy watching every second of his excited face on every aspect of our Disney trip:) I can't wait!!! I LOVE to see his beautiful, excited smile:) It's going to be a BLAST!! Ayla is going to love it too!!

If CF has taught us anything, it's that life is too short! Why wait? Take advantage of the time you have together, b/c you never know what tomorrow brings.

Here is a pic of Lil' Chris and Chris looking at the pics of our Disney Resort. (He DID have a very excited face right BEFORE I took this pic...oh well LOL:) We are staying 6 nights at the Pop Century Resort with the Quick-Service Dining Plan, Park Hopper Plus, and Waterpark!! Pop Century has THREE pools, one in the shape of a bowling pin...Lil' Chris LOVES bowling:) AND...it has HUGE cell phones at each end of one of the complexes!! We all know Lil' Chris AND Daddy LOOOOOVE cell phones;-) LOL! Ayla and Mommy love them too;-) Hee hee :) They both LOVE rides too. Neither one ever says "No" to a ride, so this vacation is going to be SOOOOO MUCH FUN!!!

Less than 2 weeks before our CF walk on May 14th, so if you haven't signed up to walk or donate yet....click here:)

Thanks, and pray we have beautiful weather for our walk and our Disney trip:)

M