CF Update / 1st Christmas Musical

I can't believe it's been since Dec 5th that I last blogged!! Sorry about that:)

The kids and I are all doing great! Our colds are all gone and Lil' Chris' cough is much better. He just seems to cough the most in the morning, but it's not as junky sounding. Once I make him blow his nose, it's not as bad. The other day before school though, he was coughing so much that he threw up 2 times! It wasn't a bad cough though, more dry than wet. Once he blew his nose, he was fine. I HATE THICK, STICKY MUCUS!!! I'm sure Lil' Chris hates it more than me;) lol

We are all ready for Christmas and can't wait!! The kids are VERY excited! I told the kids(mainly for Lil' Chris' sake) that if they finished all 3 meals of the day, then they would get an early Christmas present...so far, they have only gotten one and I started this 10 days before Christmas;) LOL

I sent about 40 Christmas cards out and I wish I could send one to all of you, so here is YOUR card;-)...Merry Christmas!!



On Dec 13th, Lil' Chris had his 1st Christmas musical!! YEA!! He did such a GREAT JOB!! I of course sat on the wrong side of the room, but I tried to get pics and video as best I could with Ayla not sitting still on my lap;) LOL Check out the video below, he is the one all the way to the right in the red shirt. After they sang, they got a special visitor who Lil' Chris just had to go see like every 2 minutes!! LOL I can't believe Ayla actually sat on Santa's lap too!! She even told him what she wanted for Christmas! She wants a pink scooter and he wants a blue jeep, but since then it has changed to a spiderman bike. LOL I think he'll be happy with what Santa got him;-) LOL

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I hope you all have a VERY MERRY CHRISTMAS AND A HAPPY, HEALTHY NEW YEAR!!!
M

Lil' Chris' 4 Year Pics / 600th Post!!

This is my 600th post!!! I thought it was fitting that it is my post of his 4 year pics:) He did such a great job and had a great smile for EVERY pic!! My handsome lil' man;-) Where did my lil' boy go?? ;'(

Productive Day!! :)

Ahhhhh if feels so good to be back in the fundraising mode again!! That is....only when the kids aren't around driving me nuts and I can actually get some stuff done!! ;-) LOL! Chris took the kids out for a drive and some lunch while I made calls.

Chris and I both had off today, so we tried to get as much done as we could for the walk today. Oma came over to help too...thanks Oma!

Here's what got accomplished today:

1. Made all my calls about getting food and entertainment for the walk. Now it's just the waiting game of waiting to hear back from them before I call them again;) lol



2. Found out how we can get electricity for the pavilion this year



3. Got letterhead ready to get Pat Catan's to do a craft at the walk



4. Clear Picture gave us the okay to do another commercial for our walk this year AND they are going to not only play it in Wooster, but they are going to play it in the Massillon area too! YEA!!! I also got a couple of pics from Heather, who has 2 kids with CF, that I am going to put in the commercial!! Now Chris and I just have to find some quite time so we can record it...that's not always easy with 2 screaming kids;-) lol



5. The Daily Record is going to print something up in the newspaper over the next couple of days about the walk and then will do a full article with a pic closer to the walk date



6. Dropped off some flyers at the pediatricians(they always keep them at the check-out window for me:)



7. Worked on making new flyers for the tables at my fundraisers, just need to print them now. Chris fancied them up with a picture this year:) YEA!!



8. Got form for fruit donation, just need to drop it off at Buehler's soon



9. Got some raffle prizes from Red Lobster, Applebee's, BW3's, and Tractor Supply & Company.



10. Best of all......I FINALLY GOT A GREAT PIC OF LIL' CHRIS DOING HIS VEST!!! Now I can put that on ALL my fundraising stuff:) YEA!!!! Boy was that rough!! It really takes both me and my husband to accomplish this! I snap away while my husband stands near me and tries to make him laugh or smile. Thanks Honey for helping me out so much today!! I couldn't have done a lot of this stuff without your help!!!

I was also able to get this great pic for the new header pic for the blog;) I love it b/c he always does this whenever one of his hoses pops out... he uses it like a hairdryer:) LOL
So, I feel MUCH better knowing that I got a lot accomplished today for the walk!! I can take a deep breath of relief;-)

Some more good news....Chris and I can't remember Lil' Chris coughing at all today!! That's a GREAT sign!! Maybe his cough IS going away all on it's own!!! Only 15 more days til his next CF clinic visit at Children's Hospital!!

Please keep Lil' Chris in your prayers...they are definitely working!!!

Thanks,
M
PS. HAPPY BIRTHDAY TO MY SIS-IN-LAW STEPHANIE!!!! WE LOVE YOU!!

CF Update / Vest Question / Halloween Pic

Sorry it's been so long since I have updated this blog. Life has been crazy at work... we had inventory, and we've been hiring like crazy!! When I'm at home, I just want to relax and enjoy the kids:) Also, since watching 7 year old Conner and other young CFers pass away recently...it puts things into perspective that I need to spend as much time with Lil' Chris as I can and savor every moment, not spend it on the computer(no offense;) Don't get me wrong, I'm still going to update, just not as often.

Since I have updated last, I have had to order ANOTHER set of hoses for the Vest!!! Good thing they make it easy and they come the next day, otherwise it would be a HUGE pain! Does anyone else have this problem with the new color washable Vests??? Also, the velcro on the shoulder straps don't stick very well. I know of only one other CF mom who has had the same problem....does anyone else have that problem??? Just curious, b/c the last time I had to order hoses, I asked them if they get a lot of complaints about these 2 things on these new Vests, and they said no.

Last Thursday, Lil' Chris and Ayla got their flu shot. It has the H1N1 in it as well this year instead of them having to get 2 shots, so that was nice. Lil' Chris was complaining about his leg hurting after the shot and would barely walk on it. Once I took the bandaide off he was fine;) LOL! Also, we all 4 got our hair cut too! Yup...that's right...I said ALL 4, including Ayla!! It was her very first hair cut!! Well, to be honest it was more like a bang trim, but it's still cutting some hairs!! ;-) LOL! I didn't want to cut the sides or back, b/c she is a girl and I want it to grow out. Her bangs were getting into her eyes, so those really needed cut! She did a great job! She wouldn't sit by herself, but neither would Lil' Chris his first time;) The girl gave her a lollipop and she was good to go!! :)

No other news to report, which is GREAT!! No one is sick and Lil' Chris' cough went away with that last round of Augmentin, thank God!! Please pray we have a healthy Fall and Winter! If I forgot to mention...his throat culture came back the same as last time, nothing to worry about for now, PTL!!

Lil' Chris can't wait until Halloween!! He keeps talking about it:) We got their pics done the other day, so here is one of them...
Hope you all are doing well!!
M

First Domino Run for Lil' Chris!!!

This past Saturday, Sept 25th, we had the first ever Motorcycle Domino Run for Lil' Chris, and it was AWESOME!!!

There were around 45 bikers in all, not bad for our first one:) We had soooooo much fun, especially Lil' Chris! His eyes got so wide every time some bikes would come back from their 95 mile ride:) He LOVED watching them pull in and park their bikes! All the bikers were so nice and generous for coming out and supporting Lil' Chris. "Thank You to ALL the bikers!!!" One biker even took Lil' Chris for a little ride!!! He was a little unsure at first, but ended up LOVING it!! I loved seeing the smile on his face:) When Uncle Greg got back from his ride("thanks Uncle Greg for riding!!";) he took Lil' Chris for a ride too on his bike! Lil' Chris, Ayla, and cousin Lincoln even got to sit in a side car!! Pretty cool :)

Later, while the bikers were eating and enjoying themselves, all of a sudden Lil' Chris came riding down on HIS motorcycle!! Yup, that's right! I said HIS motorcycle;) Everybody applauded as he proudly road his bike down in front of all the other bikes that were there! He did such a GREAT JOB and I was SO PROUD of him!! :)

It was an AMAZING day! I just want to thank everyone involved in the planning and organizing and cooking and donating and riding!! You all are AMAZING and we are SOOOOOO very thankful for each and every one of you!! I can't express how much it meant to us that you would do this for our Lil' Chris:) THANK YOU, THANK YOU, THANK YOU!!

Here is a montage of our AMAZING day...(hence the 2nd song,"Amazing";) The first song was written and sung my adults with Cystic Fibrosis who know what it's like to have CF lungs, and the last song is Lil' Chris' favorite song, "Smile";-)....

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So for those of you who are interested in what a Domino Run is, I'll try to break it down as much as possible....

1. The bikers check in as early as 8am and the latest 10:30am. They paid $20 each, and an extra $10 for a passenger. They got their directions and their first domino and they were off! The trail was 95 miles starting and ending at the church and there were dots painted on the shoulder of the road at each intersection so they knew where to go. One dot meant straight, 2 dots was left, and 3 was right.

2. There were 3 stops along the way where they would stop and get another domino. These were being tracked on paper at each stop, I believe:)

3. When they returned back to the church, they received their last domino and was given their total.

4. The bikers then ate tons of delicious food that was ALL DONATED by some awesome people!! I was AMAZED by all the food and wonderful helpers, especially this one guy who donated all the hot dogs and burgers and the big smoker/grill, AND then donated his time to stay and make it all!! He was just going to drop it all off, but then decided to stay and help out! BIG THANK YOU TO EVERYONE!! I never saw Lil' Chris eat a hot dog so fast, it was just that good!! :)

5. Then there was a 50/50 drawing, half of the money was supposed to go to the winner and the other half to Lil' Chris. When they pulled the winner he decided to give it ALL to Lil' Chris!!! I was SHOCKED!! Everyone was so generous and nice! THANK YOU RODNEY M!! ;)

6. Then they announced the winners of the Domino Run. The biker with the highest amount AND the biker with the lowest amount won a $100 Visa gift card! Pretty cool, huh?!! :) They also gave away a couple other prizes as well and cousin Lincoln won a $50 card!! WooHoo!!

7. Once they finished announcing the winners, I asked if I could say something on the megaphone. I was SO grateful for everything and everyone, that I just had to say a big THANK YOU!! As I was saying my thank you to everyone, Chris went and got Lil' Chris and brought him over. I held up the megaphone to him and he very quietly and politely said "Thank You Everyone!" It was the cutest thing ever!! Everyone laughed and cheered:) I was so proud of him!

Then it ended around 3pm. It probably would have ended sooner, but one of the groups got lost, but that's ok, because we were all having so much fun:) I hope we get the chance to do this again some day!!

Thanks again to Ron and Greg for giving Lil' Chris rides on your motorcycles!! Big thanks to Ron F. for mentioning Lil' Chris' name to be the cause for the ride which started this all. We are so honored you thought of Lil' Chris!!!! We can't thank you enough!!! You have always been a big supporter of Lil' Chris. THANK YOU!!!!

Thank you to all of our friends and family for going and supporting Lil' Chris!! It really meant a lot!

Thank you to my Dad and Tracey for taking some GREAT pictures and for letting me use them in the video above:)

Lastly, thank you to all the riders and to everyone who donated!!! It truly was an unforgettable, amazing day!!

M

PS. Thank you all for your prayers for Lil' Chris, please keep them coming as he is doing GREAT!!

Update / Montage / New Header Pic

I LOVE this pic of Chris and the kids!! I just had to make it the new header pic:) It was when we stopped to look at the big lighthouse in Marblehead(those pics coming soon;)

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Here is a montage of pics and video's that I had on my cell phone. My new phone is a 5.0 mega pixels, so they didn't turn out too bad(way better than my last phone;) lol

The first few pics are of our trip to Great Wolf Lodge Indoor Water Park. Unfortunately I didn't get any pics of the water park on my phone, so those will be coming soon;) The rest of the montage are just random pics and video's from this Summer:) There are pics of Ayla climbing up to my laptop and pretending she was Mommy;) (BTW...she came down the stairs yesterday all by herself!! On her butt of course, but it was a big moment for us;-) Then video's of Lil' Chris singing, jumping, and dancing slow and fast;-) I like the one of Ayla wiggling and playing the drums;-) lol Enjoy!!

I haven't had time to edit the birthday pics....it's like 20 minutes long and I just don't have time anymore. I may just post it "as is" LOL!

As for an update...Lil' Chris' cough seems to be gone. He coughed a little when we were at the water park, but since we have been home he hasn't been coughing much...Thank God!! Ayla is getting so big and talking more and more. Her fav words are...NO & MINE!! I guess that comes with the territory when you have an older brother;) LOL Oh yeah...and MORE, b/c she is always hungry:) lol Although, she doesn't eat as much as she used to, but still way more than her brother that's for sure! I WISH he would eat more than just hot dogs and french fries!!! He is so stubborn, he won't even TRY new things!! Drives me nuts, b/c I know his body needs extra calories and stuff!! Sigh;(

My ankle is still the same pretty much. It's still swollen around the ankle bone and still hurts when I move it certain ways. It's been over 5 weeks!! I'm just glad I can walk mostly normal;) It just mainly hurts when I walk in the morning when I get out of bed. I'll give it another few weeks. I'm praying it heals 100% soon!!

I have a request...please pray for some of Lil' Chris' CF buddies, they need your prayers. Skye and Ben. Click their names to see their blogs.

More pics to come...maybe while Oma and Opa are here this weekend I can steal away and try to get some more pics posted for you all;-)

Thanks,
M
PS. HAPPY ANNIVERSARY TO MY WONDERFUL HUBBY!!! 7 years married and 13 years from our first date;-) I LOVE YOU HONEY!! Thanks for a great weekend at Great Wolf Lodge!!

Our Heros

Well, I think this new header pic says it all...

Lil' Chris and his cousin Nathan truly are

"Our Heros"!!!

Sprain and CF Update

Well, today has been interesting!! My husband had to go to work today, so I was left alone to take care of my sprained ankle and our 2 wonderful lil' kiddos. Lil' Chris has been a big help by getting things for me when I ask him to...what a lil' sweetie pie:) Ayla has been good too by listening to me when I tell her "no, get down" or "no, don't touch". The hard part has been getting up to feed them or change them or put them down for naps and get them up or when Lil' Chris asks for something as soon as I sit down on the couch. I'm managing though and keep testing out my foot by putting more and more pressure on it. I definitely can't walk on it normally yet, which scares me b/c I HAVE to work tomorrow. I'm the only working that knows how to close down all 14 registers! I may have to use the store's wheelchair...LOL!! How embarrassing that would be!! It's a lot less embarrassing than if I were to bring in my Granny walker!! LOL!! I gotta say, that thing has come in handy though;) Thanks Honey!!

Poor Lil' Chris, he still has not been acting like himself today. He didn't throw up anymore yesterday, but he still didn't eat anything and kept acting tired. He is doing the same thing today, but he keeps complaining of a tummy ache. He is down for a nap right now, but all I keep hearing is him coughing. Poor thing. I guess it's time to call the CF clinic for another antibiotic. It feels like he just got done taking an antibiotic!!

I think Lil' Chris did catch our colds. I have noticed that the last couple of colds he has had have been kinda like this. I guess his mucus is getting thicker or something as he is getting older, b/c his nose doesn't run like a faucet like most people's do the first couple of days of a cold. His gets all stuffy and seems to run down the back of his throat. Poor guy;( It always seems to end with a cough too! Does any other CF mom's kids or adult CFers get like this too??? Please let me know.

M

PS. How do you like the new Header Pic??