Carving Pumpkins / New BIG Boy Bed!!!

Last night was soooooo much fun!!! We had a couple of friends over and we had fun carving pumpkins!! YEA!! BTW, Chris won with his spider web;) It was pretty cool looking and it didn't even take him as long as I thought it would! Thanks Andrea and John for bringing your carving kit over and helping us carve the pumpkins:)

After that, John helped Chris put together Lil' Chris' new BIG boy bed!!! I can't believe he's actually big enough for a big boy bed!! He was starting to out grow his toddler bed. Lil' Chris was sooooo excited(pee pants excited;), he even tried helping put it together;-) Once it was all done, we weren't sure if he was going to be able to get up there all by himself or not, but before we could all make it up the stairs to see if he could climb up or not....he was already jumping up and down on it!!! It was great seeing his face light up!! I love watching him reach these kinds of milestones!

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We told him that he can't wet the bed in his big boy bed, so we'll see if this helps with his night time potty training. He still wears pull-ups to bed and nap time. Hopefully this does the trick;) We are also hoping that he won't get out of bed so much anymore. Sometimes when we would put him down for nap or bed, he would get up and sneak downstairs and peak around the corner or he would just stand outside his bedroom door waiting to get yelled at. He's too funny, but it was only funny the first few times...if you know what I mean;-) Now with his new bed, maybe he won't want to get out of it since he likes it so much!! I know...wishful thinking:) So far, so good though! He didn't get out at all and went right to sleep, then again...he did have a very busy day and it was pretty late by the time he got into bed:) Only time will tell, I guess!


Although he is having a great night sleeping away in his nice big bed...Mommy lies awake worried that he may fall off or pee through. I was supposed to pick up a water proof mattress cover beforehand and I forgot. So I got up at 2:30 to put him on the potty and, well....here it is 5am and I am still awake! Oh well, who needs sleep anyways;) At least I can get this post done with no interruptions;) LOL!

Thanks again John and Andrea for all of your help carving pumpkins, putting the bed together, and for always watching the kids and being so good with them!!! You guys ROCK!! I don't know what we would do without you guys!!
M

Halloween Pics 2010

Here are the Halloween pics we got taken the other day. So glad Kiddie Candids opened back up! I didn't like Picture People, and I just HAVE to get there pics taken every now and then. Pictures are really important to me when it comes to Lil' Chris, b/c you just never know when this disease is going to flare up.

Lil' Chris is 3 and Ayla is 21 months. Boy time flies!! They are getting soooo big!! You would never know by looking at these pics that Ayla was screaming and crying a minute before;) LOL! She doesn't like her picture being taken....I wonder where she gets that from;-) LOL!!!

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Lil' Chris can't wait to go trick or treating!! He keeps saying "Halloween's coming soon!" :) Since we didn't get anything on our door this year as to when our development was doing trick or treat, another neighbor and I picked a date and time and printed the flyers and then went and passed them around to all the houses in our development! :) Thanks Andrea and Jon for all of your help!!! Our trick or treat is going to be on Halloween night, Sunday 31st from 6pm to 8pm. We can't wait!! Lil' Chris is probably going to go around to all the houses on his motorcycle since his costume is a biker;-) The apartments next to us are doing their trick or treat on Sat from 6-8, so Lil' Chris may be Spiderman for that one;-)

Last night we went to the pumpkin patch to pick out some pumpkins to carve tonight. That was the first time we walked all through the patch to find the perfect pumpkins for each of us. It was so much fun, even though they were all picked over since it's only 1 week before Halloween!! I never realized how different looking pumpkins could be! We saw one that was in the shape of a big apple!! :) Lil' Chris' favorite part was the wagon:) At night time, he said in his prayers, "Thank you for the pumpkins, and thank you for the red wagon!" Too cute!! Here are some pics from our perfect pumpkin hunting....

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HAVE A SAFE AND HAPPY HALLOWEEN!!!!

M

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!!

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