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!!

Domino Run for Lil' Chris Sat Sept 25th!!

Tomorrow is the BIG day for the motorcycle domino run for Lil' Chris!! We can't wait to see everyone and all the motorcycles!! Lil' Chris LOVES motorcycles, so he is especially excited!! If you are around, please stop by and show your support!! It's going to be a lot of fun!! Click on the picture above for more details.

Special thanks to everyone involved in the domino run!! We sooooo appreciate you doing this for our lil' guy:) We appreciate all your hard work in putting this domino run together too, I do a lot of fundraisers, so I know all the work that goes into it!!

I'll try to take lots of pics to share with everyone;)

See you there,

M

Clinic Visit

MY BIG, BRAVE BOY....

Today was Lil' Chris' clinic visit. He goes every 3 months just like most CFers. This was the first time Daddy and Ayla didn't come with us;( Although we missed them, we still had a GREAT visit!! He wore his hospital mask from the parking lot to our room, and then in the hallway when he got his height and weight check, and then from the room to the car! What a BIG 3 year old, huh? He makes me more proud every time we go to clinic:) He did such a good job and was such a good boy the whole time, that I took him to Chuck E Cheeses as a reward:) He had a BLAST!! I LOVE watching him have fun and seeing his BIG smiles and hearing his cute lil' laughs:)

Here are some pics from our day....

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His height and weight were good I guess, this new doctor didn't really say much. She didn't even tell me his percentages or BMI! I wish they would at least put it on the paper that they send us home with! Anyway, his weight last time(3 months ago) was 33 lbs and 2 ounces, this time it was 34 lbs and 5 ounces. So he DD have a gain...YEA!! Not sure how, since he doesn't eat much and hasn't been taking to the Scandishakes ever since the last time he was on an antibiotic! Last time his height was 38 1/2 and this time it was 39 1/4. Can't believe he is getting closer and closer to that 42 inches so he can go on the bigger rides;-) LOL! Next year will be so much fun!! :)

The doctor said that his lungs were CLEAR...YEA!!! I was a little worried, b/c he has a bad cough right now, but she did put him on another antibiotic;( I guess this is going to be the norm now...an antibiotic every other month;( That STINKS!!! But...at least he doesn't have to do any nebulizors yet...PRAISE THE LORD!! So he has to take 3.5 ml of Augmentin again for the next 14 days. I tried convincing her of doing the 21 days instead, to make sure the cough is gone b/c last time he was still coughing a little after the 14 days. She wouldn't go for it. I was told different doctors do different things. Our old dr. always did 21 days and this dr. always does 14 days, b/c the less time they are on antibiotics the better she says. I was told that to call at day 12 if he is still coughing and then she would prescribe another week. I guess we'll see how it goes and pray that his cough is gone by the 12th and doesn't turn into anything serious.

He got a throat culture done like usual and Lil' Chris did a GREAT JOB sitting on the table all by himself and he opened wide, stuck out his tongue, and said "Ahhhhh!" I was so proud of him!! The nurse got a great culture too...it had some yucky brown gunk on it. I've never seen that on his cultures before. I hope that isn't a bad sign. They told me they would let me know on Monday what the results are. They are going to tell me sooner than usual, b/c I told them that we are going to be around Li' Chris' cousin, Nathan who has Leukemia, next week. They said that if he cultures something bad, then he shouldn't go near Nathan, but if he cultures what he has been culturing lately, then he should be fine to go around Nathan as long as Nathan's white blood count isn't low. I asked if I could have some extra lil' kid masks just in case, so that the boys can at least see each other for a little bit. Please pray that Lil' Chris doesn't culture anything bad and that Nathan's white blood count is good and that Lil' Chris' cough goes away quickly.

A few weeks ago Lil' Chris started not wanting to take his chewable Vitamax. Vitamax is his CF vitamin. It consists mainly of vitamins A, D, E, and K. CFers bodies don't absorb these as much in the foods that they eat, so that is why they take some sort of this kind of supplement. I'm not sure why he suddenly started not wanting to take it, but I called the clinic and my favorite nurse sent us a couple of different liquid ones. He seemed to take to the Source CF one, so I told the doctor today and she gave us a prescription. It kinda stinks to go back to a liquid, but he NEEDS it.

Lastly, on our way out, we stopped by Kendall's room:) She is a fellow CFer about 15 months old in our area. I met her dad on Facebook and then I met her grandma in person at my Friendly's fundraiser earlier this year:) Today we got to meet Kendall herself, well almost, we got to see her for a minute and then they closed the door so they wouldn't share bacterias even though Lil' Chris was wearing his mask;) LOL! We did get to talk to her mom, Heather! She is super nice, they all are really great!! I wish our kids could have play dates, but CFer's shouldn't be within 3 feet of each other for risk of cross-contamination;( Maybe someday us parents can get together to chat though:)

Thanks everyone for checking in on Lil' Chris and for all your prayers. They are definitely working, so please keep them coming!!!
M

PS. Lil' Chris' cold seems to be gone...YEA!! Ayla's nose is still a little bit runny:(

Put-In-Bay

Here are the pics I promised of our lil' day trip to Put-In-Bay. It is a small island about 2 hours from us and we got to ride around in a big golf cart!! That was the best part I think:) The kids loved it....me too;-)

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First we had to wait for our ferry, then it took us to the island, then we had to rent our golf cart, then we got to take turns driving around the 4 or 5 mile island! We stopped at some stores, went swimming, saw the big tower, saw the rocky beach, and got to play a little too:) They had an awesome maze that Daddy couldn't figure out how to get through it, but Lil' Chris went right through his first time;-) So much fun!!

Can't wait to go back,
M
PS. Lil' Chris' cough turned into a wet cough, so I'm sure the clinic is going to put him on another antibiotic this Wed when we go for his appt. I'll keep you posted.

CiCi's Fundraiser / Domino Run

I had another CiCi's Fundraiser on 8/19! It was a pretty slow night and I didn't really have too much time to advertise it. We were too busy searching for a new vehicle for me. We ended up getting a 2007 Dodge Caravan!!! I LOVE IT!! I never thought I would be a van person, but I fell in love with the convenience of it, esp with having 2 kids!! I only wish that I would have gotten one 3 years ago when Lil' Chris was first born;) lol

Anyway, back to the fundraiser....we only raised $80 in tips and raffle. I think that was my worst yet;( But again, I totally dropped the ball in advertising it. Lesson learned!!

This fundraiser was cool, b/c I got to actually meet an ADULT CFer!! I have only ever met one other adult CFer in person and never really got to talk to him, so this was pretty cool:) I was going around to tables doing my usual telling everyone about CF, the fundraiser, Lil' Chris, and the raffle. When I came to this one table,...before I could finish, she looked at me and said she knows all about CF, b/c she has it! I thought, WOW! Here she was looking as healthy as can be, having dinner with her hubby and 2 kids!! I was so glad to meet her and asked her a ton of questions! LOL! I'm really hoping that they will come to our walk next year since she lives in town:)

Lil' Chris sure did have a good time when they came at the end:) Special thanks to Spencer for coming and inviting friends to come too:)

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Special thanks to my wonderful Kohl's associates who helped us get the $500 grant from Kohl's....

Stacie

Jill

Kaitlyn

Malinda

Patty

You girls ROCK!! Thanks for always helping us CF families!!! It means the world to us!! Even though we only raised $80, add the $500 and the 10% from the receipts and it should be around $700!!! Not bad!!

My next CiCi's fundraiser will be in October, b/c on Sept 25th my MIL set up a biker domino run for Lil' Chris!! This money will go towards Lil' Chris medical fund, which will one day be for a double lung transplant. You can never start too early raising money for a BIG surgery like that!! Thanks Oma for setting this up for Lil' Chris!! We can't wait!! I hope you all can join us in NJ for the Domino Biker Run:) If you have any questions, please let me know.
If you know any bikers, please spread the word!!! Thanks!!
M

Remember 9/11

Please take a moment today and say a prayer for all the lives lost on 9/11 and for all of their family and friends that they left behind.

Even if you don't read this post today on 9/11, please still take a moment and say a prayer for all the families affected by this horrible tragedy.

Thanks,

M

CF Update / Inspiring Video / HAPPY BIRTHDAY to my HUBBY!!

Grab a tissue and watch this amazing, inspiring video...



To my CF buddies....Never give up!!!! I WILL NEVER GIVE UP ON MY SON AND A CURE FOR CYSTIC FIBROSIS!!!!

Now for an update: Lil' Chris' stuffy nose is in deed a cold I believe. It's hard to ever tell with him, b/c his nose doesn't just run and run and run like Ayla's. Instead it just gets clogged in his nose and ends up dripping down his throat I think. I guess b/c of the CF, it is thicker and stickier...IDK. The way I knew it was a cold, was b/c Ayla caught it 2 days ago and her nose has been running and running. Today it is a little better, but she is just very cranky b/c she doesn't feel good. My poor babies;( So far noone else has caught it. Hopefully we don't so that we can be around Nathan in a couple of weeks. On our CF clinic visit this Wed, I'm going to ask if it is even okay for Lil' Chris to be around Nathan. I don't want Lil' Chris to hurt Nathan in any way or vice versa.

Unfortunately, I think I hear a cough coming on for Lil' Chris;( This usually happens after his colds, probably b/c of the dripping down the back of his throat. Fortunately we have clinic in a few days. He'll probably be put on ANOTHER antibiotic if it doesn't go away between now and then.

Lil' Chris asked me today where Oma's car was, so I said that she went to the airport b/c Opa is flying in for the weekend for Daddy's birthday. He said, "Ohhhhhhh yeah! She's gonna CATCH him!" LOL!! This kid cracks me up on a daily basis with some of the things he says;-) LOL!

HAPPY BIRTHDAY to my WONDERFUL HUSBAND!!!! I LOVE YOU HONEY!! Can't wait til you get home from your new job so we can celebrate!!! This kids bought you a present:) Wanna know what it is??? I'll give you a hint.....it's freezing!!! ;-)

Update on Everything:)

Just a quick update....

Lil' Chris woke up today with a stuffy nose;( Not sure if it is a cold or just allergies. We'll see tomorrow, I guess. Yea, I have off tomorrow!!! lol :)

I ordered new hoses again for his Vest and they came in like 2 days...LOVE the Hill Rom Vest Company!!! I can't believe how quiet it is again!! The rings were starting to come off on the old ones and it was making a lot of noise although I could never find a hole or anything. I guess that must be common with these, b/c that's what happened last time. I would get mad, but they send the new ones out so quick and for free!!

Here is a pic of Lil' Chris playing with his old hoses...he found out you could blow through them, and talk and listen like a phone;) The blowing part was good practice for when he will have to do PFT's someday. I was trying to get him to blow real hard and hold it for a long time. We'll see if it helps someday:)

Lil' Chris has a CF clinic appt coming up on the 15th, so please pray all goes well and that he gains weight. I'm kinda worried about his weight like usual.....the kid just WON'T EAT!!! Drives me NUTS!!! Ever since he was on that last antibiotic, he hasn't been drinking his scandishakes right down like he used to. So yeah, I'm a little worried about his weight. Plus, this will be the FIRST time I will have to take Lil' Chris to the clinic all by myself!! My husband and I always take him together, but this time he can't come b/c he has training for his new job.....yup, that's right....I said "new" job;-) I think this one is a keeper;-) One good thing is that it's nice that Oma can stay home with Ayla....she drives us nuts at clinic. LOL! It's a long day for anybody, especially a 1 1/2 year old.

As for my ankle, it is doing much better. The swelling has gone down quit a bit and is almost all gone, I think:) It still hurts going down steps and moving side to side, but it's getting there;-)

Nathan, Lil' Chris' cousin with Leukemia, is doing much better. He is up and running(kinda;) and is getting back to his good ol' self from what I hear:) That makes me happy. Can't wait to give him a BIG hug!!! Did you know that September is Leukemia Awareness month???? Show your support by wearing orange this month and by changing your profile pic on fb to something orange. I bought Lil' Chris an orange shirt, so as soon as I get a pic of him wearing it, I will change my profile pic and header pic:) We love you Nathan!!

The above pic is of the kids waiting for our boat to come to take us to Put-In-Bay. It's a really cool island...more pics coming soon:)

Thanks everyone for all your continued prayers,
M

Blog Award....YEA!!!!

I have recently been awarded, not one, but TWO blog awards!!!! YEA!!!



The first one called "A Blog With Substance" was from Katey at "My CF Journey With God". Katey has always been a HUGE help to me, especially when I was planning my first Great Strides Walk!! I couldn't have done it without her. She is always more than willing to answer any questions I have for her, no matter how personal they may be;) She is a great source for me to go to since she has been there, done that. She is a 25 year old(I think;) with Cystic Fibrosis. If you ever have any questions, ask Katey, she knows A LOT about CF!! :) Thanks Katey for this awesome blog award and for always being there for me:)

As part of my acceptance post, I’m supposed to sum up my blogging philosophy, experience, and motivation in 5 words. So here they are:

Fun

Informational

Inspirational

Loving

Spiritual

Now I am going to give the “Blog With Substance” award to 5 other blogs that I really like and enjoy reading. I think these blogs (and authors;) are amazing!! Click on their title to visit their blog and tell them Lil' Chris sent you;)

1. Porter's mom, Melissa, at Chatterton Family Blog. Pray for Porter as he will be going under to get his tonsils and adenoids out and also a nasal polyp out. He is just the cutest lil' guy:)

2. Skye's mom, Kayla, at Skye is the limit. Skye has been going through a lot for a little CFer. Please add her into your prayers to get much better. Check out her blog to get updates on her.

3. Melissa's mom, Traci, at Keeping Up With the Liberto's. Traci and I clicked from the get go:) She was the first CF mom I met that had a CF kid the same age as mine. I think Lil' Chris is just 1 or 2 weeks older than Melissa. She has taught me a lot over the past couple of years. She was the reason I started potty training Lil' Chris when I did, b/c I got to see through her blog how well Melissa did:) Thanks Traci:) Traci is also pregnant with another lil' girl. I pray that she will not have CF like Ayla.

4. Phoenix's mom, Angela, at Phoenix's Fight. If you have been following my blog for a while, you have probably seen me mention him a few times before. He is the cutest lil' kid and does so well with what he has to go through on a daily basis thanks to CF. Angela does an awesome job raising money for CF. I wish I could do all that she does. Go Angela!!! :)

5. Sophie's mom, Gemma, at Lungs Behaving Badly. Sophie is about the same age as Lil' Chris too! I just recently met Gemma when she awarded me with the "I love Your Blog" award!!! :) I'm so glad she did, so now I can keep up with her blog:) Her blog is great, so check it out!

I hope you check these awesome blogs out! They are GREAT!!

Well, Ayla is calling me, so I guess I will have to share the other blog award next time;)

If you have a blog and have never received a blog award, leave me a comment here so I can share the love;) Or if you have already received them before but would like another, just let me know;-)

Thanks,

M