Make A Wish!!!

I was going to blog about the exciting things we are going to have for our walk and to thank those who have donated and signed up to walk with us so far, but....I HAVE SOME EXCITING NEWS TO SHARE!!!!!!!

Lil' Chris has been approved for his wish to be granted from the Make A Wish Foundation!!!! YEA!!!!!!

We are all soooo excited!!!! I know you are probably wondering where we are going, so with no further ado ......DISNEYLAND in California!!!! WOOHOO!!!!!

It's kinda funny, b/c up until the day the Make A Wish volunteers came out to ask what his wish was, he kept saying he wanted to go on a Disney Cruise. Even right before they walked in, he was still saying Disney Cruise, with Disneyland as his 2nd choice. When they asked him what his wish was though, he said Disneyland. Not sure why, but we are glad he made that big decision all by himself. After the shock of him changing his mind, we realized that he made a great choice, b/c he will have much more fun at Disneyland going on all the rides, since that's his favorite thing in the world to do:) Good Job, Buddy!! We are so proud of you!!

All the details still have to be worked out, but we can't wait!!! Of course I will have lots of pics for you all when we get back:) It's not for a few months though, so this is going to be the longest few months ever! LOL

We are VERY thankful for this opportunity that Lil' Chris' CF dr has approved him to be ok enough to go on this trip, and for the Make A Wish Foundation to send us on this trip!!! We couldn't be more happy!

We are so thankful that his health has been good and he is able to enjoy such a great opportunity. It will truly be something he will remember for the rest of his life no matter how long or short it is. Wow, it's hard to type that, as I'm sure it's hard for you to read that, but it's the reality of Cystic Fibrosis. His health could change at any time. We are so thankful that his school has been so good about trying to keep him as healthy as possible, especially through this rough, long winter. THANK YOU Wooster Christian School staff and parents!!! You guys are the BEST!!! They are even doing "Change for CF" to help raise money for a CURE by bringing in their loose change!! Some school families have already signed up to walk too!! We are hoping to have a big WCS team at our walk again like last year:)

I'd like to try and give back to Make A Wish, so I'm going to try and set up some AiA events through Kohl's to help get them some $500 grants from Kohl's. Also, if you would like to give back, here is the link to our Make A Wish chapter to donate...http://oki.wish.org/

Also, here is the link to sign up to walk with us on May 4th or to donate for a CURE for Cystic Fibrosis...http://fightcf.cff.org/site/TR/GreatStrides/104_Northern_Ohio_Cleveland?px=1442439&pg=personal&fr_id=2280

Thanks so much everyone!! Please pray that Lil' Chris stays healthy these next few months so we can go on our trip to Disneyland!!!

Thanks,
M
PS. I got lots of good prizes yesterday for our walkers...details coming soon:)

Disney 2012 Vaca Photo Book

Check out this Photo Book we made by Shutterfly of our 2012 Disney Vacation...(better late than never, right??) LOL

Click here to view this photo book larger

Shutterfly photo books are the new way to preserve your memories. Create your own today.

Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

Fun Weekend Project!!

Here it is....

 Lil' Chris and Ayla helping:)

 This is just steps 2-12 out of 35 steps of wood with their bags of screws and nails(lots of prep work)

 My sheet to organize each step;) LOL

 Our AWESOME neighbor, Sean, was a HUGE HELP!! THANK YOU SEAN!!

 Lil' Chris helping:)

 Lil' Chris helping get the roof started:)

 Ayla is on the 2nd floor, and the Chris' are on the 3rd floor;) lol

 One roof is up!! It's so cool that Chris and I can stand up straight on the 2nd floor:)

 Chillin while Daddy and Sean put on the 2nd roof:)

 About to put on the swing part!!! YEA!!

 Playing while Daddy puts the picnic table together:)

 Ayla swinging while Lil' Chris was at his last day of JKindergarten. She was happy to have it all to herself:)

 They go pretty high! Their heads go above the 3rd floor!! This is their favorite part...the yellow swing;) LOL

 Having their 1st picnic at their new picnic table:) It's kinda nice in the shade behind the rock wall and slide!

 Spying on me with their telescope, and Ayla driving the ship with the wheel!!

They couldn't be happier:) The smiles on their faces every time they play on it, makes it all worth it:)

4th Annual Great Strides Walk was a SUCCESS!!!

Our big 4th Annual Great Strides Walk for Cystic Fibrosis was this past Sunday and it was AMAZING!! We had about 150+ walkers and raised about $20,000 dollars!!! WOOHOO!!!!

Our first year we only had about 50 walkers and only raised about $5,000...I'm so happy how our walk has grown and multiplied!! The more walkers=more money raised=the closer we are to a CURE!!! :) 

Our first year, everyone was able to stand under the pavilion and I would just stand on a table to talk, but this year there were so many walkers, that the only thing that would work was the loud speaker from the Ambulance:) And then Officer Cruz was nice enough to start the walk off with his siren! That was pretty cool! Maybe next year I'll see if Lil' Chris can push the button, that would be neat:)

This year was the first year I had to do all the announcements and everything, b/c Nate from the foundation had to go to another walk. I didn't mind doing it, but I felt bad that I wasn't more prepared. I got up there and completely went blank on a lot of our sponsors:( Next year I will def make a list and be sure to mention all of our sponsors!! So... since I can't go back in time and add them to what I said...I'll just mention them now on my blog(please feel free to share this blog post;) lol....

BIG THANK YOU TO OUR SPONSORS...
Panera Bread donated 100 yummy bagels. THANKS JESSICA!!!
Domino's on Burbank donated 25 yummy pizza's. THANKS VIC!!!!
McDonald's on Burbank donated 30 cheese burgers and french fries. THANKS LINDA and CHRISTIE!!!
Kohl's in New Philly, Medina, and Wooster=$1,500 for the day of the walk!!! WOOHOO!! By Sept, Kohl's will have donated about $7,000 total, and that's just OUR team, not all over the country!! Gotta love Kohl's!!!! If you don't shop Kohl's now.....you gotta start!! They raise millions for Cystic Fibrosis!!!
Wooster Christian School team had 8 different families that were there supporting Lil' Chris:) THANKS EVERYONE!!!
Preferred Wireless Sprint in Wooster
Verizon Wireless on Milltown Rd in Wooster
Wayne Savings Community Bank in Wooster
Starmark Farm in Wooster
General Building Maintance Corp. 
An anonymous $250 sponsor
The Faithful Little Cupcake
Feikert Concrete
Uncle Jim's Pepper Mustard
Pat Catan's
MCTV
Akron Aeros
Buehler's
Wooster Fire Dept
Wooster Police Dept
Samaritan Care Ambulance
Dr. Dave and his AMAZING balloon animals:)
Carrie G-Thirty-One
Stephanie W.-Arbonne
Lu Ann Miller
Phyllis and Reed Seiberling
Tim and Jessica Corbett
Kathi Bond

Overall, we had a BEAUTIFUL day for our walk, a little windy when I was trying to tape down all the prizes and when we all were trying to put up our canopies, but still a gorgeous day!! 

BIG THANK YOU to my fellow CF moms Samantha, Denna, and Alma for all their help!! Denna made little goody bags for all the kids, and made BEAUTIFUL signs for all the CF kids so the walkers could read a little bit about who they were walking for and why. Samantha got LOTS of prizes and I'm happy to say that I actually ran out of raffle tickets!!! That's the first time EVER!!! I still had stuff to give away, but there were no more names in the bucket!! WOW!!! That's awesome!! Thank you Alma and team for all the yummy cookies!!

BIG THANK YOU to Nate for bringing and setting everything all up, and to everyone else who helped out in setting up too...my husband, Spencer, Oma, Opa, Jessie, and Kevin!! I was so thankful that Kevin volunteered to take pictures with his awesome camera this year!! THANK YOU KEVIN, you're the BEST!!! I will post the pictures when I get them:)

THANK YOU to our CFers who we walked for...Lil' Chris, Daniel, Jack, Aden, Sophia, and Aubrey!! You guys did a GREAT JOB wearing your Hawaiian leis the whole time and staying away from each other, because of the risk of cross contamination!! So proud of you all!!

SPECIAL THANK YOU to all who walked for "A Cure 4 Lil' Chris!!" I would name you all, but there were so many, about 80!! That's AWESOME!!!;) We had lots of family, friends, co-workers, neighbors, and  classmates!! I'm sorry I didn't get to go around and talk more with you all. You all brought tears to my eyes with how many showed up just for Lil' Chris!! We can't thank you all enough for giving up a Sunday to walk, and for all your generous donations!! 

BIG THANK YOU to my sister and her kids for driving all the way from NC to walk for Lil' Chris:) We had so much fun at the walk, at Put-in-Bay, and Acres of Fun mini golf!! Can't wait to see you guys again!!

Thanks again everyone who walked, donated, or sponsored our walk!! It sure was a SUCCESS!!! More pictures coming soon!!! :)
M
PS. Update on Lil' Chris' CF clinic visit this last Wednesday coming soon!!

Thirty-One Party for Cystic Fibrosis 7/25/12 at 7pm

Ok everyone, I'm having my first ever Thirty-One party to benefit the Cystic Fibrosis Foundation to help find a CURE for CF!! Who wants to help me raise some much needed money to find a CURE and also get some pretty cool hand bags for yourself?? ;-)


Everywhere I go, I always see someone carrying a Thirty-One bag! I've been told by many that "You're not cool, unless you have a Thirty-One bag!" So I've teamed up with my awesome neighbor, Carrie G, to host a party at my house this coming Wed 7/25 at 7pm(message me or email me for address if you want to come). I can't wait! This is the first party that I've ever hosted! I think I went a little overboard on buying stuff for the party;p I got all kinds of different chips, cookies, pretzels, and soda:-)  Well...I DO have a CFer in my house, so....Yes, everything is high calorie, sorry :p LOL


Feel free to pass this along to get more orders and to get more money for the CFF!! You can order no matter where you live!! You don't have to be here for the party to order something! Just click this link and make your order and 25% will automatically go towards CF!!  http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E1971734&from=MYEVENTS


BIG THANK YOU to Jeanette for being the first to order and to get her friends to order too!! Thanks Jeanette, you're the BEST!!!


Another BIG THANK YOU to my 2 sisters and my neighbor Andrea for ordering as well!! We are almost at $250 already and we didn't even have the party yet!! That's AWESOME!!! 


Thanks everyone for helping support Cystic Fibrosis!! It really means a lot!!


Before the party this Wed, Lil' Chris has his 3 month check-up at the CF clinic. Please pray that his PFT's are up and that his culture is normal and that his lungs are clear! He has been doing really well and hasn't been coughing hardly at all!! Praise the Lord!! I think the Pulmozyme is doing it's thing;-)


Thanks,
M

Pulmozmye Update, 4th of July Pics/Video's, and Swing Flip

Lil' Chris is doing GREAT with this new nebulizer routine!!  He doesn't mind it at all, and on day 2, he actually asked to do more afterwards;-) I told him it's only one time a day and he got a lil' sad. What a kid! He takes any new thing the dr.'s throw at him SO well!! He AMAZES ME!!

I, on the other hand, am still getting used to it. I'm surprised I haven't forgotten yet since we have been so set in our ways doing the Vest in the morning. It really helps having the nebulizer machine right next to the Vest machine, b/c I've caught myself about to put his Vest on and then I see the nebulizer and I go and get the Pulmozyme out of the fridge real quick;-)

So, I'm still learning a lot thru this whole new process and luckily I have a GREAT CF community to help me out with all my silly lil' questions. CysticLife.org is so great to have around in times like these...

1. We are supposed to wash it afterwards with a clean paper towel and soap and warm water, THEN sterilize them after each use. Oops, didn't do that the first time, we just rinsed them.
2. You can't pour the Pulmozyme in the cup and then let it sit on the counter...it leaks :b Learned that the hard way!
3. Boiling water is HOT!!! I about burned my fingers trying to fish them out of the water after it was in the microwave for 6 minutes and I even let it sit for a couple of min before I tried to get them out!! OUCH!!
4. Lastly, it's hard to tell when the medicine is done. I try to shake it towards the end and then more comes out, but still it's hard to tell and I hate to waste any esp since it's outrageously expensive! Thank the Lord for BCMH!! Please pray we never lose BCMH!

I hope you all had a Happy and Safe 4th of July!! We had a great time at the pool and BBQ at Oma and Opa's house with John, Andrea, and Kennadie!! Afterwards, we went to the soccer fields where we have our CF walk every year, and they had some special things going on, and one was the kids got to sit in some army vehicles and got to turn them on, honk the horn, and step on the gas!! They LOVED it!! They kept asking where their buddy Spencer was and if he drives these :-) I think they are going to have lots of questions for Spencer when he returns home from the army in a month or so;)

Here is a pic of the kids about to watch the Children's Hospital Helicopter, "Air Bear", take off. They liked exploring inside of it, while I secretly prayed they would never have to use it!!

Here is a video of the kids watching the helicopter fly off. It takes a while, but at the end they pray with me that they never have to go in one of these. Too cute...and sad knowing that it's a possibility for Lil' Chris someday:(

After that was fireworks time!! They covered their ears until half way thru, but then they put their hands down and realized it wasn't so bad after all;-)

Well, Lil' Chris continues to do GREAT!!! He is having no side effects from the Pulmozyme and I think he is coughing less too now that I think about it:) YEA!! Right now, he is having fun playing outside on his swing set:) 

On Tuesday, we went looking for a nice new swing set since he loves playing on his tiny old hand me down one, but my goodness they are expensive!! The one we want is white plastic over wood, so then we don't have to worry about splinters, or any mold or rotting or having to stain it each year, but it's like $4,000!!! YIKES!!! Of course it had to have a lil' playhouse which Ayla LOVED, b/c it had windows and a door:) She kept going in it and wanted us to knock to come into "her house"...too cute!! Oh well, maybe some day. On second thought...we might need one sooner rather than later, b/c he just almost flipped the whole swing set by swinging too high, and he just taught himself how to do flips, which is ok, but I'm afraid he might hit his head, and he loves hanging from the top...I guess there's not much else to do with it. LOL I think he needs a twirly tube slide, a rock wall, a rope wall, a horse swing thing, and a much taller, faster slide! He would be in Heaven!...and so would Mommy knowing it's much safer :) lol

Here is a video of Lil' Chris trying to make the best of his swing set(which we are very grateful for, otherwise they would have had nothing all these years, he's just outgrown it now;) and of course him doing a flip!! He was so excited the first time he did it!! I just can't believe he taught himself and he didn't hit his head! Still scares me!

Thanks for checking in with us and please keep your prayers coming!!

M

PS. Remember baby Chaia?? Well she just turned 1 the other day!! Amazing what prayer can do! Thank you all for praying for her, she still needs it as she has a long road ahead of her. Also, please pray for some fellow CF friends...Phennyman and Tricia. Phoenix had surgery the other day and is still in the hospital, and Tricia is going thru so much right now, she has an infection in her sinuses and she continues to loose weight and her breathing difficulties are increasing. Her husband, Nate, keeps a blog about her(which is what got me to start this blog so many years ago;)...www.cfhusband.blogspot.com. Please keep their families in prayer too. Thanks.

"Change for CF" Results and Party

Today Lil' Chris' preschool had a pizza party for all the money they raised for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis! It was an honor to join them in their pizza party and watch his friends celebrate in raising $173.57 to help find a CURE for CF!!! I loved watching Lil' Chris give his goody bags to his friends too as a thank you:) Ayla had fun at the party, she just joined right in:) LOL

Being protective of his lil' sis who joined their line:)

Being silly picking up Ayla

Pizza Party Time!!

He's the one who needs the calories the most, and he ate the least amount of pizza out of all the kids! LOL

He did eat his pretzels though :)

WOW!! LOOK AT ALL THAT CHANGE FOR CF!!! The kids did a GREAT JOB raising so much money for CF!!

Group pic with all the change that they raised!!

Goody bag for the kids as a THANK YOU!!

Lil' Chris passing out the goody bags to his friends:)

Ms. Carrie made this and sent it to all the kids to start the fundraising:) She did a GREAT JOB!! I love the pic of Lil' Chris! It's neat to see how much he has grown since the beginning of the school year:)

She also sent this home with the kids to get them to come to our walk on June 9th at 9am behind Ida Sue School!! One parent told me today that she signed up to be a team leader in honor of her friend in PA who has CF! What a GREAT way to support her friend and Lil' Chris!!

 

WE LOVE YOU MS. CARRIE!!!

 BIG THANK YOU to Ms. Carrie for setting up the "Change for CF" fundraiser and for inviting them to our walk, and BIG THANK YOU to ALL Lil' Chris' Preschool friends for bringing in change for CF!! We appreciate it soooo much!!! THANK YOU!!!!
M
PS. Lil' Chris has been doing great, no cough!! YEA!!! CF Clinic visit update coming soon!