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!!

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M

Ayla's 3rd Birthday Pics and Video & Lil' Chris' old 3rd Birthday Video :)

Make a video - it's fun, easy and free!
www.onetruemedia.com

I can't believe my baby girl is 3 years old already!!! She is getting so tall just like her big brother:) Check out the video above of her 3rd birthday...She picked out the song ;)

For her birthday, the 4 of us went to Disney World at the end of January!!! We had sooo much fun!! It was their 2nd time going! More pics to come:) Minnie is her fav:)

Things she's doing now...

We started potty training her the first week of January and my goal was to have her ALL potty trained by her birthday 1/29...I'm proud to say she did it, and is 100% potty trained!!!! She didn't even wear any pull-ups in the long car ride to Disney!! She has had only one accident since before her birthday and that happened just the other day. She has been daytime potty trained since March of 2011 when she was 2, but now it is sooooo nice that she is potty trained at night time too!!! I know she could've done it earlier, but I guess my husband and I were just being lazy and didn't feel like changing sheets in the middle of the night yet;-) LOL! In the beginning of potty training, she would call for us at least once in the middle of the night to go potty, but for the past month or so, she has been holding it ALL night like her big brother!!! Sooooo proud of her!!! And I'M soooo happy to not have to get up in the middle of the night anymore;-) LOL

We changed her crib into a toddler bed once she turned 3, just like we did with Lil' Chris when he turned 3. She liked it at first, but then when it was bedtime, I think she missed being the baby;) She wanted us to pick her up and put her in just like when it was a crib. She also has not gotten out by herself in the morning either. She will stand up and call for us, just like she used to in the crib. This is kinda good and bad...good b/c she never gets up a million times like her brother does, bad b/c she's trying to act like a baby still, and also bad b/c then WE have to get up and go get her. That was the big reason I wanted to change the bed, so she could get out herself and not call us to go get her since she is usually the first one up around 8am!!! Oh well, she'll learn soon enough I'm sure. For now, I should enjoy it b/c if she's anything like her brother...she'll be driving us nuts soon getting up and down out of bed and not wanting to go to sleep!!! LOL

Her hair is starting to get really long. She HATES it when I try to put ponytails in so it's not so wild and crazy when we go out!! LOL

She is talking A LOT, maybe a little too much!! LOL! Her speech is not as clear as Lil' Chris' was at this age. She has problems with her "R's" and "L's" so we are working on it. Her pediatrician says it's normal at this age and she will get better when she starts school probably. For now we just keep correcting her and it is soooo funny watching her stick her tongue way out for the "L's." :) I can't help but laugh sometimes, it's so cute:)

She can spell her name and pick out the letters, but she can't write them. She's a little stubborn when it comes to writing, but I remember Lil' Chris was too at this age. We'll have to practice lots before she goes to preschool, possibly this Fall. Ever since we got the iPad, she's been learning her letters and numbers more and more. She works that thing better than me!! She goes from one game to the next game, and she can look at pictures and blow them up...I wonder what the future of these kids will look like with learning all this technology at such a young age?!? :)

She is very particular about things being in their right spots. She will usually correct what Lil' Chris does if it is wrong. For example, if he takes his jacket off and just throws it on the floor, she will come and pick it up and put it on the chair where we usually put their coats all the while saying "Chris! It goes over here!!" She's kinda motherly to him in some ways, even when it comes to him doing his Vest or taking his pills. She will remind him if I tell him to do something and he doesn't do it right away:)

She still sucks her pointer finger on her right hand when she sleeps. Not sure how I'm going to stop her from doing this. Her teeth are really starting to stick out b/c of it though, so we'll have to start doing something really soon.

Lastly, she can be VERY stubborn when she wants to(I have the video's to prove it;) LOL!! But overall, she is a pretty darn good kid! She listens very well and if she doesn't, she does what I tell her usually by the time I count to 3, b/c she knows she will get a spanking if she doesn't. She rarely has to sit in time out, but when she does, she sits very well until I make her apologize for usually hurting her big brother and then gives him a kiss and a hug....I make them do that part more for ME than for them, b/c it just too cute;-) LOL

Today I came across Lil' Chris' 3rd birthday video that apparently I never got around to editing and posting, sorry about that;) Better late than never, right??? Sorry it's not edited completely:) Check out the video below...I can't believe how little Ayla was!! Her hair was soooo short and she wasn't even talking!! Lil' Chris looks so different with longer hair too:) He now gets buzzed by Mommy just like Daddy does...his first buzz cut by me was last month;-) I think I like him in shorter hair, it looks cute:) You'll see in the video that he doesn't get a break from treatments on his birthday...his day STARTED with the Vest and ENDED with the Vest with no complaints! He such a good kid:)

Make a video - it's fun, easy and free!
www.onetruemedia.com

I hope you enjoyed the pics and videos,
M

SURPRISE!!!!!

Here it is, our big announcement to the kids...

Make a video - it's fun, easy and free!
www.onetruemedia.com

We surprised the kids with a trip to DISNEYWORLD!!!! WOOHOO!!! It was soooooo much fun!!! We ALL had a BLAST!!!! It truly is a magical place:)

Don't worry, the video above is not the only video I got! More pics and video coming soon:)

I couldn't believe how tall the kids have gotten since last May when we went!! Lil' Chris is 44 inches and Ayla is 38 inches!! They got to go on extra rides this year!! Lil' Chris got to go on his first really BIG roller coaster!! I thought he was going to be scared(I was), but he LOVED it!! He went 2 times with Daddy and 2 times with me:) I couldn't help but watch his face the whole time laughing and giggling, even though I was afraid of hurting my neck on the twist and turns;-)

So get this...I got the letter from the CF clinic like last time so that we wouldn't have to wait in the hot lines b/c he has a fatal lung disease....and wouldn't you know...when we got to the park the first day, I had forgotten it at our hotel room!!! UGHHH! So I went to talk to them to see if I could get that pass at any park and the girl said "What did you need?" At first I didn't know what she meant. Then I said, "Well, last year they gave us a pass for the rides and also one for our stroller." She said "How many are in your party?" I said 4. So she wrote them up and gave them to me!! I was SHOCKED!!! I didn't even have the paper or nothing!! I was soooo happy tho, b/c we ended up going on a lot of rides that night. We got to go on a lot of rides EVERYDAY thanks to that pass!!! We would just get right on!! We even got to skip the lines for the characters autographs too!!! Although, I usually felt bad doing those, so we would only do it on the really long line ones, like for Mickey:) It was AWESOME!! The one and ONLY good thing about Cystic Fibrosis! I'm just so happy he was healthy enough to go again!!

I was a little worried about what the weather was going to be like, but the Lord blessed us with an absolutely beautiful week!!! It was in the 80's the whole time and no rain until we were driving home, then it rained a little on our drive!! Usually when we go to Disney, it is soooo hot that I have to use a fan/water squirter, but I didn't have to use it at all this time!! We even went to Blizzard Beach Waterpark the last 2 days and didn't have to worry about burning our feet on the hot concrete!! Both kids went down water slides that I was even leery about going on at first;-) LOL

Unfortunately Lil' Chris developed a cough on the second day. I think it was b/c we went swimming in our All Star Sports resorts heated pool late at night and then when we got out, it was a little chilly. I guess too much for his lil' lungs, IDK. Anyway, that night he woke up at about 2 in the morning with that weird barking cough that he had once before. He coughed for a lil' while and wanted to lay with me. Luckily I brought his inhaler and Acappella. He eventually calmed down and fell back to sleep. His cough didn't sound as bad when he woke up, but he did have a lil' cough the rest of the week, and by the end it turned into a wet nasty cough. Monday 1/30, when we got back home, the first thing I did was call the CF clinic. They got him on an antibiotic right away, since he cultured a new bacteria last time. He cultured his usual Staph Areus(MSSA), and then Stenotrophomonas (Xanthomonas) maltophilia, which is new, but they said does not need treatment unless he is ill. They said that this is a common bacteria and may come and go in his cultures from time to time.

Make a video - it's fun, easy and free!
www.onetruemedia.com

The CF nurse doesn't think it was b/c of the pool, but who knows?? He could've caught something at the park or at a rest stop on the long drive. Going to Disney is always a risk we take. I was especially nervous this time, b/c we went in cold and flu season. I guess in a way we are lucky he only got a cough and not the flu.

So he is taking Bactrim 2 times a day, 12.5 ML each time...that's the most I think he has ever taken!! Please pray his cough goes away completely, it's already starting to get better! He has a CF clinic appt on the 15th, so I'm praying it will be gone by then and his new throat culture won't have any new bacterias. Stinks he will miss his preschool Valentine's party;-( I was so sad when I noticed that, b/c that was my favorite day of the year growing up and I got all excited he was going to have one this year. Oh well, it's not like he doesn't have 12 more years to go, right?

My sister D and bro-in-law were nice enough to let us stay at their house on the way to Disney and back to break up the looooong drive. It was soooo nice spending time with them!! I really miss my big sis! I had a lot of fun painting nails with my nieces too. They are getting so big!! Lil' Chris had fun playing new video games with his cousin:)

On Sat 1/28, we celebrated Ayla's 3rd birthday!!! YEA!!! It was so nice celebrating with my family:) Ayla loved all her princess presents, esp the castle that Aunt D got her;) Pics/video coming soon, I have to finish editing it:) The story of my life!! LOL I noticed I have a ton of video's that I uploaded but never posted b/c I never finished editing them. Hmmmm I wonder if I can edit them on my iPad??? I'll have to try it.

Oh yeah, not sure if I mentioned it on here...I won an iPad2 at work!!!! I still can't believe I won it, I never win anything!! I'm soooo very thankful for it tho, b/c Lil' Chris loves playing with it while he does his Vest....I love it b/c it keeps him quiet during his Vest;-) LOL Plus it's a good incentive for him not to complain about putting his Vest on..."If you put your Vest on, you can play the iPad!" He usually runs right over;-) Sooooo nice!

On another good note about work, I was accepted into the Advancement into Management training!! I'm already part of the management team, but on the low end. This will make me an Executive...an Assistant Store Manager:) I've already completed my training and am just waiting for a position to open up!! I'm REALLY hoping and praying that I get to stay at the same store!!! I really don't want to be too far away from Lil' Chris if anything were to happen with his breathing. Also, IF he were to ever get hospitalized, I may still be able to work since it's only like 5 min away. Please pray with me that I get to stay at my current store :)

Thanks,
M
PS. Ayla developed a stuffy nose last week, but so far no one else has caught it...maybe allergies or something b/c it's not bad at all???? Probably something to do with this crazy warm winter we are having! Although....it IS SNOWING NOW!!! YEA!!!

CF Fundraiser Results!!!!

Jayde getting her face painted by Melissa :)

Our CiCi's Pizza CF fundraiser the other night went GREAT!!! We even did face painting this time:) Thank You Melissa for your great art work!! ;-)

In total, we raised about $750!!!!! Woo Hoo!!! So far, Kohl's has raised $1,500 for our Great Strides!! My goal is $5,000:) We CAN do it!!

BIG thank you to my fellow Kohl's associates for volunteering their time to come and help out so that we would get the $500 grant for Cystic Fibrosis. You girls ROCK...

Melissa M.

Beth Z.

Sharon H.
Sherri M.

One particular couple touched my heart, b/c while they were there eating, they put my event on their facebook page so that their friends and family would come and support CF too!! Isn't that AWESOME!! They have been to a couple of my fundraisers now:) Thank You guys!!!

Special thanks to some of my awesome neighbors who came to support Lil' Chris...

Carrie & Gideon

Ryan, Tiffany, Jayde & Rylee

My next CF fundraiser at CiCi's Pizza in Wooster will be on Thurs May 5th from 5-8p, so spread the word!!

Our Great Strides walk will be on Sat May 14th at 9am at the beautiful walking path by Ida Sue School!! It's going to be a lot of FUN!! So spread the word and bring the whole family:)

This weekend Nathan, Lincoln, Tyler, Uncle Greg, and Aunt Steph are in town, so the kids are having a BLAST playing with their cousins:) Thank the Lord all of our colds are gone and that Lil' Chris doesn't have a bad cough...although he did wake up coughing this morning, but hasn't much since. And thank the Lord that Nathan is doing well:)

I hope everyone has an AWESOME Easter!! We will be doing an Easter egg hunt today, then go see HOP the movie, and then dying Easter eggs:) YEA!!

HAPPY EASTER!!!

M

Update / Montage of Summer Pics;)

Sorry it's been so long since I've updated. Any spare time we've had lately, we've been searching for a new car for me. We are taking advantage of test driving different vehicles with a third row seat while Oma is still here. It's too hard to try to test drive cars with 2 kids, b/c of the car seats and you know....them screaming;) LOL Anybody have any suggestions for an all wheel drive SUV with a third row seat, or a nice all wheel drive van(I'm trying to stay away from a van, but they are kinda convenient with 2 kids...we'll see;)

Can you all please say a pray for my nephew Nathan? He was running a fever today so they had to take him to the hospital! There is no obvious signs of infection, probably just a virus, but he is staying overnight to be monitored. Please pray he gets better soon so he can go home to his 2 brothers. He has been a champ lately with all the chemo and everything. I'm so proud of him!!

Lil' Chris has been doing well. He and Ayla have been having fun playing with Oma:) Thanks Oma for babysitting, doing wash, dishes, and cooking!! You ROCK!!

Here is a montage of some random pics of the kids this Summer. The first video is of Ayla coughing every time I told her to fold her hands to pray before dinner:) It was so funny!! She must have done it a million times, b/c we kept saying "fold your hands" and we could not stop laughing:) LOL

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

Please also say a prayer for Lil' Chris' CF buddies Phoenix and Sophie. They need to get some answers soon. I HATE what CF does to these lil' bodies!!!!! Click on their names for their blogs.

Thanks for checking in,

M

PS. My next post will be about not one, but TWO blog awards I got recently;) YEA!!! Thanks girls:)

Christmas 2010 Montage/Update/Pray for Eva M.

Sorry I haven't posted in a little while:( We have been having a blast! My sis-in-law and her family and my MIL and FIL all came to visit last Thursday and then left on Monday. My MIL is staying until the 27th to babysit for us since our babysitter went on a missions trip and our other babysitter is moving on the 26th. So...

"THANK YOU OMA FOR STAYING TO BABYSIT FOR US AND FOR ALL THE HELP AROUND THE HOUSE!!"

So, since I'm busy entertaining over the next couple of weeks...I thought I would post some pics that I haven't had a chance to post yet. Here is our Christmas 2010 montage...I like the video of Lil' Chris with the red tray we got him. He couldn't figure out what to do with it;-) Also, it's funny at the end when he made the motorcycle go all by himself:) THANK YOU OMA AND OPA FOR THE AWESOME MOTORCYCLE!!

Make photo slide shows at www.OneTrueMedia.com

Just for a quick update...

1. Lil' Chris has been coughing a lil' today...hopefully it goes away on it's own real quick! Please say a prayer for him.

2. Ayla's other tooth started coming in next to her right front tooth, and her molars are coming through!!! No wonder she has been fussy a little lately.

3. The last couple of weeks, Ayla has been standing on her own!!!

4. She can now push her little baby stroller all by herself!!!

5. She has also taken a step!!! YEA!!! :)

Now for some CF stuff... Please pray for Eva Markvoort. She is an adult CFer who desperately needs a second double lung transplant. She is in her last days unless a donor becomes available. Here is a video of her saying "goodbye"...some CFers or CF parents may not want to watch this...

Please Please Please become a donor today!!! So many lives depend on it!! Spread the word and you could save Eva's life, Lil' Chris' life, or any CFers life! A double lung transplant is a CFers last resort and it could add another 5-10 years onto their life if not more!

I'll post some old pics that I forgot about soon...like Ayla's dedication pics and Lil' Chris' birthday pics:)

I hope you have a GREAT day!!

M

PS. Please keep Eva in your prayers.

New Things The Kids Are Doing:)

Since no one guessed what new things the kids are doing....lol...here it goes....

Lil' Chris has been peeing standing up the last couple of weeks!!! YEA!!! He is doing a GREAT job for his age, I think:) Lately he has been having accidents only when he naps, is doing his Vest, or when he is eating in his high chair. Not sure why??? We are working on it though. He doesn't do it every time, just sometimes. He usually never has any accidents while he is playing or watching TV. The other day he woke up from his nap dry!! That's a good sign!! The only problem is that he is only learning when he takes a nap when I am home. My hubby still puts him in a pull-up and we have the sitter put him in a pull-up so she doesn't have to clean up the mess. He'll get there eventually. I gotta say...it has been sooooo nice saving money on all those diapers!! Having 2 kids in diapers was rough! I can't believe they are like $42 a box now!! Crazy!

Lil' Chris can also catch a ball now!! Daddy did a great job teaching him. He caught 8 in a row for me the other day! What a kid:)

He also started bossing around Ayla...I didn't think this started so young!! LOL If she grabs a toy of his or something that she is not allowed to have, he says "No Ayla!" and takes it from her. He is so cute:) He is such a good big brother...he gives her toys that she can play with and he helps mommy out by taking the small toys away from her so she won't choke. The only problem now is that he keeps giving his food to her. He sees us giving her food, so he thinks he can too:)

Guess what word Lil' Chris picked up..."crap"...I don't know where he got that from;0 Ok, it was me;( It's cute hearing him say it every time he drops something. LOL

I got him to finally eat some Mac n Cheese the other day!! I tried it again and he wouldn't eat it:( I'll keep trying. We had a dietitian come to our house to help us to get him to eat more foods. Hopefully it helps. He was drinking the Resource Breeze Orange juice(250 calories), but now he won't touch them. Weird. Sometimes he will drink a Scandishake(600 calories). We are still working on getting him used to them so he can get extra calories.

Ayla can now clap her hands! YEA!! It's so cute. I tried to get it on camera, but no luck. Someday I'll get it:) She is now eating more foods. She loves pretty much everything!! Whatever Lil' Chris doesn't finish eating, we give it to her. Sometimes this trick will make him want to eat more;-) Smart huh?! lol

I finally dug out the bouncy seat for Ayla. She LOVED it! She isn't bouncing yet, but she loves to swing in it! Lil' Chris LOVES to push her;-)

Ayla is rolling around more and more everyday! One minute she's here, the next minute she's way over there!! Too funny:)

Guess what??? Ayla has another tooth coming through! This one is the top front left tooth. The right one is about to come through any day now:) I can't wait, b/c I love it when babies only have the front 4 teeth;-) lol

Enjoy the video...
M
PS. Coming soon...Birthday and Dedication pics;-)

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

Ayla's Dr. Appt. & OC Pics

First off...BIG THANKS TO MY COUSIN DAWN FOR HER VERY GENEROUS DONATION TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!! THANK YOU SOOOOO MUCH DAWN!!!! I just know a CURE will be found soon with so many generous people in the world like you and ALL my donors:)

I was looking at some of my montages and noticed that I never posted a few of them, so here is one from our trip to Ocean City Boardwalk with my in-laws and brother-in-law and his 3 kids. We are wearing our CF walk shirts, b/c we walked for a CURE earlier that day:) It just so happen that the weekend we went there, they were having their Great Strides Walk, so we got to go to it! I was so excited to finally be a part of our NJ team for Lil' Chris;-) It was a lot of fun:)

Photo and video editing at www.OneTrueMedia.com

Ayla had a doctor's appointment the other day and she is doing GREAT!!! She weighs 15 lbs, and is 25 inches long, and is in the 75 percentile across the board!!! Good news is now she can start eating cereal! Now the fun begins.....trying to feed 2 kids food;-) lol As of right now, Ayla is drinking 8 oz of formula about 4-5 times a day. She sleeps from about 8:30pm-7:30am. She takes about 2 or 3 naps a day. She loves to watch TV and watch her brother running around;-) She loves to kick her feet and try to squirm out of her bouncy seat and swing:) She still doesn't like to stand though, but she will soon enough I'm sure;) Here are some pics of her when Mommy forgets to buckle her in her swing...oops:) Also I added some pics of Lil' Chris caught sitting on the blue chair that holds his Vest machine when not in use...too cute:) And some pics of his new toy with lots of tools...THANKS AUNT STEPH & UNCLE GREG, & TYLER, NATHAN, & LINCOLN!!! He LOVES it and has been playing with it non-stop!!!

Photo and video editing at www.OneTrueMedia.com

I hope you enjoy the pics, there are lots more to come(once I get time to upload them that is;-)
M

1st Annual Great Strides Walk

Our first annual Great Strides Walk was this past Saturday and it went GREAT!!! It was a BEAUTIFUL day!! Not too hot...it was just right:)

Overall, our walk raised over $7,000!! Originally our Great Strides Event Planner, Erica, wanted us to set our goal at $5,000, but we said we could do $10,000! Well, we almost made it:) We still have until the end of Summer to collect money, so hopefully we will still hit our goal of $10,000! I think we will;-)

My team alone will have raised over $4,000 once I collect the pin-up money!! That's including $1,500 in grants from Kohl's from doing 2 CiCi fundraisers, and then we had 8 associates from Kohl's at our walk($500 for each event)! Plus, we hopefully will be bringing in more money from our professional photographer that was at our walk. He is with Federal Photo and he took LOTS of pics and has them on-line for people to order them. 100% of ALL orders from our walk pics will go towards a CURE for CF!!! Isn't that AWESOME...100%!!!!! He did a FANTASTIC JOB!! THANKS JEFF:-) If you would like to see the pics and order some, go to www.federalphoto.com.

My sister D drove 8 hours to come to our walk with her 3 kids...what a trooper and a great sis:) We had SO much fun when they were here, but now they are gone and we miss them:( But tonight my husbands sister and family is driving 8 hours to come visit us! They should be here really soon:)

Thanks again everyone who donated to help find a CURE for CF! My family GREATLY appreciates every cent;-) And THANKS to my team for walking for Lil' Chris...Barb N, Karen T, Kaitlyn, Stacie, Deb F, Katee R, Missy, Sean, D, C, E, R, Jeff. Thank you to Lil' Chris' old babysitter, Deb, who put a team of 4 together;-) She was the first person to actually put a team together for us:) Thanks Deb:) Lisa who contacted me through email b/c she saw my commercial also came with her hubby. Her step brother passed away from CF:( Thanks for coming Lisa and for donating:) So altogether, my team had about 18 people!! Pretty good for our first walk in Woo!! I'm not exactly sure how many people were there overall. It looked like about 50-75 maybe. There were a lot of kids which was great! The balloon guy was awesome! The kids had a blast with all his balloon animals! Pat Catan's(craft store) was there doing crafts with the kids which was great! The kids got to make visors to wear:)

There were only 3 things that didn't go exactly to plan...the fire truck and 5 pizza's from Papa John's never showed, and the Coromega samples didn't come in time. I think the fire truck wasn't there, b/c they said that they are on call so if there was an emergency they wouldn't be able to make it. In the beginning of the walk an ambulance went by with it's lights and siren on, so I'm guessing that the fire truck was headed in the same direction. But that's ok, we still had a great time without them all:)

Here are some pics of our 65 Rose Garden that a lot of my readers were curious about. Thank you to all my Rose Sponsors! You guys truly are amazing for helping out Lil' Chris with your VERY generous donation:) I think my team was the only team that had any Rose sponsors, so thank you again SOOOOO very much to .... my cousin Rob & Family, Al & Nancy, Christi & Dustin, my OBGYN(who was the first to utter the words Cystic Fibrosis to us), my Dad, and to all the stores who did pin-ups for us...3 CiCi's Pizza locations, Wooster AT&T, and of course Kohl's for 3 $500 grants;-)

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

I'll have the rest of the walk pics soon;-)

M

R.I.P. Brian

Sorry I haven't posted lately. We were out of town. My husbands close cousin unfortunately passed away in a horrible car accident. He was only 28 years old.

He was such a great kid...always a smile on his face, would do anything for anybody, and was a great cousin to my hubby growing up. He will truly be missed.

His parents decided that in lieu of flowers, they wanted the money to go towards our Great Strides walk for a cure for Lil' Chris. I thought that was very touching since their son supported CF research. He walked for a cure last year, but didn't get a chance to this year. He will always be thought of as we walk each year for a cure.

WE MISS YOU AND LOVE YOU BRIAN!!
M

Ayla is 6 Weeks Old, D's Visit Pics, & Clinical Trial Video

Wow, where did the time go? My lil' girl is 6 weeks old today! It seems like yesterday I was still pregnant! She is doing GREAT!! Thank God!!

In the past 6 weeks, we found out that she doesn't have CF and she is gaining lots of weight and is learning so much! When we went to the dr.'s yesterday, her weight was 10 lbs. 7.5 oz.!!!! She gained 3 lbs. in 6 weeks!! She is now drinking 4 oz. of formula only, since I have to go back to work on Monday 3/16:( and she still only sleeps 2-4 hours:(

I've noticed a lot of differences between her and her brother when he was her age, I guess b/c of the CF. I never realized what a spit up baby Lil' Chris was until I had Ayla. She doesn't hardly spit up at all!! We could never burp Lil' Chris over our should, b/c of the fear of him spitting up(actually, now I realize it was more like throwing up, lots of carpet scrubbing:(. Lil' Chris couldn't take powder formula, b/c it would make him throw up more. We always had to use the concentrated cans which are very expensive!! Thank God for secondary insurance! Ayla takes the powder formula with no problems. I never realized how much easier powder formula is either! Another funny difference, Lil' Chris used to pee all over us all the time, Ayla hasn't peed once while changing her, since we got home from the hospital that is!! It's kinda funny that Ayla got her first cough and cold way younger than Lil' Chris did, and he's the one with CF! Go figure.

They both have a lot of similarities too though. They both had great neck control early on, both love baths, both look a lot alike, and they both love to smile:) I've noticed sometimes when Ayla spits up, she spits up like Lil' Chris used to at that age...arch back, straighten limbs, spit up comes out of mouth and nose, and then the screeching lil' cry afterwards that just breaks your heart. Maybe all babies do this, IDK.

Here are some pics of Ayla and Lil' Chris today. Lil' Chris did a good job keeping Ayla occupied while I watched Y&R. LOL;) She loves attention from him and he loves giving it to her(although sometimes he can be a lil' rough;)

Make an on-line slideshow at www.OneTrueMedia.com

As for an update on how they are feeling, Ayla's eye stopped tearing and getting all goopy at about 10pm last night. So the pressing that the dr. did earlier that day really worked! I'm glad I called and took her in before it got worse and turned all red. Lil' Chris is still coughing. He doesn't cough all the time, but when he does, it's pretty nasty sounding. He didn't have such a good day today. I tried giving him a new high calorie drink today, and about 3 hours later, he started throwing up like he used to when he was little. We have connected all the dots and realized that all those times he used to throw up like this was b/c of trying these kinds of new drinks...and guess what they all have in common.....SOY PROTEIN! Yup, he must be allergic! So now we know to definitely stay away from it, b/c he throws up on and off for about 3 hours after drinking it. Right now he is sleeping, b/c he is so exhausted. It drains the life out of him:(

On a happier note, here is a great video of a CF girl who does clinical trials to help find a cure for CF. Is anybody else doing any trial? I was never sure how I felt about letting Lil' Chris do them, but this girl has such a great attitude about it! Plus Carmen, Charmain's daughter, has been a great inspiration too! I just hope Lil' Chris grows up to be as caring for others as these girls are:) Click here for the video. A BIG THANK YOU TO ALL WHO PARTICIPATE IN CLINICAL TRIALS TO HELP FIND A CURE!! If it weren't for people like you, our CFers would no be where they are today!

Here are the pics from when my sister D visited that I promised. My favorite pic is the one where Lil' Chris wanted to wear the clothes that D brought for Ayla. So I tied one around his neck and then I tied the pants to his one leg and then put a headband on him:) He loved it and kept it on the whole time we were going through the bags of clothes! Good thing I have a little girl now to play dress up, huh Honey?!?

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

Thanks Aunt D for Visiting Us=)

Thanks D for driving 8 hours all by yourself to come visit us and help us out! You did too much!!! Thank you so much for all your good home cooking, doing dishes, and cleaning, esp. Ayla's bottles:) Thanks for bringing all the girls clothes for Ayla and for helping me go through them. Thanks for all the toys you bought for the kids too. Ayla loves her bouncy seat and Lil' Chris loves all his Thomas trains! Thanks for the books with their names in the story too! That is so cool:) They are going to LOVE them when they get older! Thanks for getting up with Ayla during the night too, so I could catch up on some much needed sleep:) You're the BEST!! Tell S I said thanks for watching the kiddos so you could come out:)

I'm uploading the pics now, so I'll post them later.
M
PS. I noticed this weekend that Lil' Chris is getting 2 more teeth on top! YEA!!

YEA!! D Is Here!!!

My sister D is here and we are having a GREAT time!!! She even babysat the kids tonight so Chris and I could go out on a date;) Chris took me out to dinner and then to a movie! We haven't seen a movie in such a looooong time! We saw "Paul Blart Mall Cop"! It was HILARIOUS!!!! It's a must see if you like comedies:)

Well, I better take advantage of D staying up with Ayla tonight and get some much needed sleep;) Thanks D!! Although, I must say thanks to my sweet hubby for staying up with her last night, b/c he had off today;) Thanks Honey!!
M

Christi & Dustin's Visit and Valentine's Day

Make an on-line slideshow at www.OneTrueMedia.com

Here are the pics I promised from when my best friend Christi and her husband, Dustin, came to visit, and from Valentine's Day. I can't wait til they have kids too:) I only wish that they lived closer to us:(

Thanks Christi and Dustin for traveling so far to see us:) And thank you guys for the adorable dress and onsies for Ayla and for the fun toy for Lil' Chris:) He hasn't stopped playing with it=) Thanks for wiping it down before you wrapped it too, you always think of everything;)

Thanks for babysitting and "making" us go out to dinner for Valentine's Day...it's been a looooong time;) You guys did such a great job with Lil' Chris and Ayla!! I appreciated the nice break from doing everything too;) You guys are the best!!!

Last but not least, thank you soooooo much Christi and Dustin for doubling Lil' Chris' medical fund and for making all the beautiful jewelry and for selling them for Lil' Chris!! You guys have such big giving hearts, and it shows how much you love Lil' Chris!! We can't thank you enough!!

Come visit again real soon:) We Love You!!!
M
PS. I'll post pics of the beautiful jewelry later, and Ayla's 3 week pic;)
PSS. Don't you just love the video where Lil' Chris keeps kissing his lil' sis;)

Ayla's First Visitor's

Sorry I haven't posted recently. The kiddo's don't like to sleep at the same time :0

Anyways, my mother-in-law(MIL) and father-in-law(FIL) were here from Thurs 2/5 - Mon 2/9. They were Ayla's first visitor's! I, along with my MIL took lots of pics:) Here are some of them... (I love the video's in this montage, they are so cute:)

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

Believe it or not, those were only the pics that my MIL took:) LOL It took me all day to just download those. I'll post the pics I took later;)

My MIL came up with the names "Oma" and "Opa" for the grandkids to call them. I think they mean Grandma and Grandpa in German. She tried to get Lil' Chris to say the names and he did! It was so cute! He is so smart!!

Special thanks to my MIL for staying up every night with Ayla!! It was soooooooo nice catching up on some much needed sleep;) And also thanks for cooking and doing the dishes and cleaning up all of the toys after every time Lil' Chris played with them!! She even made sure our house was in shape for our next set of visitors!! Thanks again Oma!!!

Special thanks to my FIL for helping my husband do some projects around the house;) We love the dimmer switch in Ayla's room and the dinning room;) Now we won't roast when we play our games at the table;) Gotta love game nights;)

Now we are waiting for our next set of visitors. My best friend Christi and her husband are coming this Sat-Mon. I'll try to get lots more pics;) I know Christi will:)
M
PS. 2 week pics coming soon:)

Cousin's Are Funny: )

While on vacation, we picked up my niece's from school and they were so excited to see us! They were making Lil' Chris laugh almost the whole way home. Here are some video's of him laughing hysterically at his cousin doing something weird that she just made up. He thought is was so funny, that he had to give it a try. Now, whenever we are out and he sees another kid, he has to do it. My husband and I just crack up, b/c it is so cute. It's like he thinks he's doing something cool with the big kids:)





We were at a restaurant the other night and there were some kids sitting behind us, so he thought he would show them how cool he is:) I think the whole restaurant was laughing. (sorry the video is bad and makes a weird noise, it was from my cell phone, you may be able to see it, but not hear it...sorry)

Our lil' Vacation

Finally, I got all my thousands of pics from vacation all downloaded! We had a great time seeing my sister D's new house...it's BEAUTIFUL!! I'm so glad my Dad went too, he never gets to see Lil' Chris. We had so much fun watching Lil' Chris play with his cousins. He usually is never around other kids, b/c everybody lives so far away:( He had a BLAST this weekend though! So did his cousins:)

We did all kinds of stuff...we went to a lil' festival thing that their town was having, we went for a walk around their development and thru a path in the woods, we saw a cute lil' turtle, we celebrated a couple of birthdays, and oh yeah...we celebrated Christmas. I know what you are thinking..."Christmas in October???" Well, we kinda had to since they live so far away and since I will be 8 months pregnant at Christmas time. There is no way I'm traveling then! So, we just celebrated a lil' bit early this year...the kids didn't mind, I'm sure:) It was a lot of fun! We can't wait to go back again!

Here is a slide show of some of the things we did. Of course, we can't go anywhere without doing his vest. He didn't seem to mind it one bit! He was distracted by all the new toys he got to play with=)

Here is a video of Lil' Chris doing his Vest when we finally got there at around 10:30pm. The video is a lil' dark, sorry:(


Here is a video of lil' Chris following his cousin around to play with the Christmas present we got him, a lawn mower. Lil' Chris is 16 months and his cousin is almost 2. I guess we'll have to buy Lil' Chris one for Christmas too:)


This video is of Lil' Chris doing his Vest with his cousins help:)


The kids liked racing the boys around on the nice hardwood floors=)


Hope you enjoyed them! Later I'll post the video of Lil' Chris laughing hysterically in the car, b/c of something his cousin was doing.
M

Vacation

It was a looooong trip, but well worth it! In the 15 hour car ride, Lil' Chris learned how to clap his hands! YEA!! Now he can't stop. Every time we say "Yea", he claps. It's so cute. His forth tooth also started to come in more that weekend. Now he has 2 on top and 2 on bottom.

I hope my Aunts and Uncle and Gram don't mind me putting their pictures on line. D said she warned you :) LOL

HOPE YOU HAVE A GREAT 4TH OF JULY!!
M

Visit and Some BIG NEWS!!

Hey Everyone,
We are back from vacation and back to blogging! I know, you are excited as I am ;)

This was Lil' Chris' first time meeting his Great Grandma! He loved her from the first minute he saw her. So cute!! It was also his first time meeting all my Aunts and Uncles! He loved each and every one of them. Lil' Chris was so good the whole trip. He even climbed a mountain with no problem! What a trooper he was. It wore him out so much, that he slept through his whole 20 minute Vest the next morning! That was the first time EVER!!

It was great seeing my sister, D, and her family too and my Dad. I wish we all lived closer:(

I would show you pictures from this weekend, but I haven't found my thingy to download the pics yet. Sorry:( Maybe D can post some pics for me. I think it's great that we both do this blog together. Especially since she may have to do most of the blogging for the next month or so until I start feeling better. "What do you mean, you ask?" Well....I kinda have some news for ya.......

We're

PREGNANT!!

Yup, I couldn't believe it either! I am 2 months along and sick as a dog:( But hopefully only for another month. It's still hard to believe that Lil' Chris is going to be a big brother! I get an ultrasound on the 18th of July, so I'll let you know how it goes. My due date as of right now is January 30th, 2009! The doctors have already asked if we want to get tests done to see if this baby will have CF too like Lil' Chris. We haven't really decided yet, but does it really matter? We are going to love and care for this baby no matter what he or she has or doesn't have! The Lord knows what he is doing, and we have faith in Him.

To any CF moms out there...did you get the test done to see if the baby you were carrying had CF?

M