1st Annual Great Strides Walk for Woo!!

Sorry it's been awhile, I was on vacation YEA!!! It was SO nice to get away! We went to the OC Boardwalk again and to the Wildwood Boardwalk. It stinks our vaca wasn't a couple of weeks ago...we could've met Nate, Tricia, and Gwyneth;-) lol I guess great minds think alike;-) lol Ayla got dedicated:) My sister-in-law and Mother-in-law threw a Dedication/2nd Birthday Party for Lil' Chris. We had a BLAST!! Also I went to my 10 year high school reunion!!! Can you believe that with my other blog I was able to lose 25 lbs in under 3 months to get ready for the reunion and to lose this baby weight?!? I sure was shocked every time I got on the scale!! Don't you all wish you would've joined me 3 months ago now??? Just kidding lol;-)

We had lots of fun on vaca and I took TONS of pics, way too many to post them all. I'm trying to upload some of them, so I hopefully will have them posted soon for you;) But for now, you can enjoy these pics of our 1st Annual Great Strides Walk in Wooster:) I actually didn't get any group pics with my camera we had our own sign and everything, but the professional photographer got some I just haven't had the time to order them yet. If you would like to order some, he reduced the prices and 100% of the proceeds will go towards a CURE for CF!!!! Visit www.federalphoto.com to see them or order them:)

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

Click here to check out Bethany, a 21 year old CFer who is pursuing her country music career. I thinks she is a GREAT singer and an inspiration to all CFers and I wish her all the best of luck;)

I also want to thank those who read my post about joining the CF Research Panal(click here to read that post and sign up if you haven't already). So far I have gotten $200!!! Thank you to those who mentioned my name:) Please let me know if it was you(they don't tell me who it was) or if you are going to join and mention my name, so I can thank you;-) I only know of 1 CF mom who mentioned my name. I haven't even had to do anything yet and I'm getting paid! Join today, it's really easy!!

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

Happy Father's Day Honey:)

I just wanted to say that Lil' Chris and Ayla are SOOOOOOOOOOOO lucky to have Big Chris as their Daddy:) He is truly the BEST Daddy ever!!! I don't know what we would do without him. I definitely don't think that I could do this without him. He is my rock!

It actually surprised me as to how well he takes care of Lil' Chris! I didn't know what to expect in the beginning. I guess I just thought that he is a guy and won't care about germs and stuff, but it is the exact opposite! He is even better about watching out for germs than I am!!! He catches me sometimes and says "Did you sanitize his hands first?" I'm SOOOO glad and grateful and blessed that he is ALWAYS thinking of Lil' Chris' health first before anything else! I couldn't ask for a better husband to help me care and raise Lil' Chris, and Ayla too;)

HAPPY FIRST FATHER'S DAY WITH 2 KIDDOS!! THANKS HONEY FOR ALL THAT YOU DO FOR US!! WE LOVE YOU WITH ALL THE LOVE IN OUR HEARTS!!!!!!!!
Love,
M, Lil' Chris, and Ayla

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

Lots Going On & New CF Mom Blogger!

Lil' Chris LOVES his cell phones!!!

Yea I'm so excited our walk is this Saturday!!! It's been a lot of work, but Lil' Chris is well worth it:) But I'll admit, I'll be glad when it is over;-) I'll finally be able to relax! Hopefully next year will go a lot smoother. I'm sure the first year is always the hardest.

I'm also SO excited that my sister D and her kids are coming tomorrow!!! I can't wait!! This will be the first time her kids get to meet Ayla!! Her oldest daughter will be selling friendship bracelets at the walk:) I've been attempting to make some too:) I tried making some that say "Cure CF" in the middle, but they didn't turn out so great. Maybe my niece will be able to teach me how to do it better;-)

To update you on Lil' Chris, he hasn't been coughing as much as he was the other day. It's kinda weird...some days he will cough more than others. Is it allergies? I have no clue! We have his annual clinic appointment next month, so I will ask them what they think about allergies.

FYI...I met a new CF mom blogger:) I love meeting new CF parents!!! Please click here visit her blog and tell her Lil' Chris' mom sent you;-)

Also, please visit baby Ethan's mom's blog. It sounds like she was a having a bit of a rough day remembering her precious Ethan and wished he was still with us. My heart goes out to her.

On another note, the ground hog that lives under our shed gave birth to 2 baby groundhogs. They are cute, but not so cute that I want them in my backyard all the time! At least Lil' Chris gets a kick out of watching them run around and eat our grass. In this pic you can see the mommy and the 2 babies in the back eating our grass...

Phoenix got his VEST...YEA!!! I love hearing about CFers getting their vest! It does wonders for them!

I hope you have a GREAT DAY!!
M
PS. I'll try to take lots of pics at our walk this Sat. Please join us at 9am if you are in town:)

Thank You Donors!!!!!!!!!

I just wanted to say a big THANK YOU to ALL my donors for our walk this Saturday!

THANK YOU to our friends & family for donating:

Rob, Heather, Isabella, & Olivia

Christi & Dustin

My Dad

Al & Nancy

Chan, Todd, & Joshie

Grammy Roe

Great Gram D

Uncle Joe & Aunt Diana

Al S.

Aunt Kathy & Uncle Paul

Amy F.

Barb N.

Kristin, Matt, & Emma

Denise L.

Kohl's Associates(Jeans 4 Genes Days)

THANK YOU to those who donated in memory of Brian F:

Matt & Sue N.

Pamela & James P.

Janvier Voluteer Fire Co. No. 1

And THANK YOU to those who I know are bringing in their money on the day of the walk:

Aunt D. and Family

Sean & Michelle

Kohl's associates

Deb & Church group

THANK YOU to all of our company sponsors:

Thank you EVERYONE for all your donations and for helping make our first Great Strides Walk in Wooster truly memorable:)

If you are in town, come & join us this Saturday at 9:00am for our Great Strides Walk to take steps to CURE Cystic Fibrosis! It's going to be a lot of fun!! We are going to have a fire truck there, Pat Catan's will be there to do some crafts, and a clown to do balloon animals!! Plus you can enjoy some great food...Pizza, McDonald's, cookies, chips, fruit, & water. Also, get a free sample from Coromega Omega 3's! You can also get your team or individual picture done by our professional photographer from Federal Photo and all proceeds will go towards a CURE! Don't forget that there are over 30 prizes to be won too!!!! See you there;-)

If you haven't donated yet and would like to before Saturday, then click here to donate! Our team goal is $2,000 and we are at $1,730! We are almost there!! YEA!!!!

M

PS. Lil' Chris was coughing a lil' more today, please pray it goes away soon.

PPS. If I forgot anyone who donated, please let me know. My brain is kinda shot from all this planning;-)

Lil' Chris' 2nd Birthday Pics :)

Photo and video editing at www.OneTrueMedia.com

Don't forget to check out my last post with his other pics:)
M

HAPPY 2nd BIRTHDAY LIL' CHRIS!!!

I can't believe my baby boy is 2 today!!! Where did the time go?!? I remember having him like it was yesterday:) It was the day all the fun began;-)

It brings tears to my eyes thinking about the last 2 years and all that the Lord has blessed us with. He has blessed us with not only Lil' Chris, but also our precious Ayla=) Most importantly, He has blessed us with Lil' Chris' ongoing good health. We can't thank the Lord enough for all that he has done for us and for Lil' Chris so far....

• No hospitalizations
• No nebulizors
• No real bad bacteria growing in his lungs
• No sinus problems
• No breathing issues
• No bowel problems
• No horrible tests

Like I said, we can't thank the Lord enough!! We sure are grateful for 2 GREAT Healthy years!!! Here's to finding a CURE for Cystic Fibrosis and to MANY more GREAT years!!!

HAPPY BIRTHDAY LIL' CHRIS

I LOVE YOU!!

Love,

Mommy

I hope you enjoy the header.

He is doing SOOOO much now!! He's counting, saying his letters, saying LOTS of words and sentences, repeating EVERYTHING, and loves playing with his toys, loves playing outside, and loves being tickled;-) Mommy loves to tickle him too;-) LOL He is so smart! The other day I gave him a hanger to hold and he said "Triangle?" I about fell over;-)

In this video he was counting and "cheesing it up" for the camera (in between burps...sorry about that;-)

Make video montages at www.OneTrueMedia.com

Here are some other random pics from May and June...

Make video montages at www.OneTrueMedia.com

I'll post his birthday pics from today soon, they are uploading right now. He got a pretty cool gift;-) We are going to celebrate his birthday for real at the end of the month when we visit family.

M

PS. Don't forget to read my last post about how you can help find a CURE!!

Please Read!!! Seeking CF Research Panal

Hey Everyone,
I don't know if you'd be interested in this, but I just signed up for this Cystic Fibrosis research panel. I got $50 for joining and will get more money for each study I participate in. They do research for pharmaceutical and biotech companies to find out the opinion of people with CF and their caregivers on things like what treatments they are using and what things they would like changed.

They only asked me a couple of questions. I didn't think we would qualify, b/c Lil' Chris isn't even on any nebs or anything, but we did qualify and I got $50!!! You get money for every study you do, and you can opt out at any time. Don't worry, it's not any medical studies. Just over the phone questions or through email. You also get money for referrals, and for updating your info every 6 months. Not bad huh? ;-) Get money to help find a CURE ;-)

What I did, is I called the number below and left a message, then I emailed them my name and phone number and when was a good time for them to reach me. They contacted me the same day and it only took about 2-3 minutes! It's VERY EASY!!

If you do join, please mention my name, Michelle Neher, and I'll get credit.

If this does not pertain to you, please forward it onto whoever it may. They are only doing this
study in the US.

Thanks for all your help in finding a CURE. Big thanks to Julie for telling me about it;-)
M

PS. Let me know if you get qualified;-) I emailed this to those whose email address I have, or was able to look up on your blog. I was actually surprised at to how many blogs don't have their email connected to it! So if I didn't email you .....Click here to start earning money today:)

Here is what it says when you click the link above and then download...(it kinda jumbled it all together when I cut and pasted it on here, that is why I linked it above, but I tried to fix it;-).......

SEEKING: PATIENTS WITH CYSTIC FIBROSIS &CAREGIVERS OF YOUNGER CF PATIENTS

EARN $50.00 or more!!

We are conducting studies on the care of cystic fibrosis (CF) in the United States and are looking for adult (18+) patients diagnosed with CF - or the caregivers of younger patients – to join our research panel.

v Participating in this research will be an important contribution towards efforts to advance the quality of treatment and care for those living with CF!

v Qualified participants will earn $50.00 plus the opportunity to earn more money by participating in future research studies.

v To begin, we will need to ask you a few preliminary questions to see if you qualify which will take about 5 minutes. To contact us:

· Send an email to CF_Panel@wwmr.com with your name and telephone number, and we will call you back, OR

· Call Michelle Nordstrom toll free at 1 (888) 947-2339 ext. 112.

· Be sure to mention that you heard about this study from: Cystic Fibrosis Research, Inc. (CFRI) and Michelle Neher! Some details about the research panel:

v Any market research projects will be optional and you will be compensated for your time. Studies might include obtaining feedback on CF medications or suggestions to improve educational brochures.

v For in-person market research studies that you choose to participate in, all surfaces will be disinfected before and after interviews to reduce risk of cross-infection. Interviews will be spaced so that CF patients will not come into contact with one another. In addition, patients will not be asked to handle any materials that have been handled by other patients.

v The panel will never be used to provide promotional materials or to sell anything, and you can opt out at any time. Your information will be held in the strictest confidence.

About WWMR, Inc. WWMR, Inc. is an independent marketing research and strategic consulting firm. More information about WWMR can be found on our website: www.wwmr.com

Did Somebody Call a Fire Truck?!? =)

GUESS WHAT???? I got a fire truck to come to our walk next Saturday!! YEA!!! They will be there from 10-11. I'm SO excited!! I know the kids will LOVE it!! Not so sure how this will work with the germs and trying not to let the CFers cross-contaminate each other?!? I guess we'll see how it goes this year:)

I have been getting SOOO many people come up to me saying that they saw the commercial we made!! Some say that they thought I was in their living room, b/c they heard my voice;-) LOL I even got an email from someone who saw the commercial!! Her step brother passed away from CF and that she lives in our area. She said that she would love to join us and help out in any way possible! Thanks Lisa;-)

I'm SO glad that the word is getting out there about our walk! I hope we have a GREAT turnout next Saturday:) I'm getting REALLY excited and can't wait!! I also can't wait, b/c my sister D is driving in with her 3 kids the day before the walk!! Having them there to witness our FIRST walk in our town is AWESOME and just makes it that much better!!

To think....a year ago I had this whole walk all planned out in my head, and now...well, now it is all coming true;-) THIS ALL STARTED BECAUSE OF YOU, LIL' CHRIS!! Look at the difference you are making in this world already, and you are not even 2 yet!! =)

If you haven't donated yet, please click here to donate. Time is running out:) If you want to know where your money is going, read this email I got from the CFF...(it goes towards finding a cure;-)....

Research update: Your donations at work!
1. Inspire Pharmaceuticals, Inc. (in RTP) recently announced positive results from a Phase 3 clinical trial of denufosol, an inhaled therapy for the treatment of CF. Denufosol is designed to improve chloride transport in the airways and enhance mucus hydration and clearance.
--The study, called TIGER-1, involved 352 patients over a 24-week period. It showed significantly improved lung function in patients taking the drug. The data from this trial is particularly encouraging because it brings the CF community one step closer to a novel treatment that addresses the basic defect in CF.

2. The CF Foundation announced recently that VX-770, an investigational oral drug aimed at treating the basic defect in cystic fibrosis, showed positive results in a 28-day, Phase 2 clinical trial. These data bolster the successful interim results reported from the first part of the trial in March of this year. Both studies were done with patients who carry the G551D mutation of CF.
--"Data from the Phase 2 trial of VX-770 provide evidence that a small molecule can address the basic defect in cystic fibrosis, and suggest that modulation of CFTR may play an important role in CF therapy," said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.
VX-770 is being developed and tested by Vertex Pharmaceuticals Incorporated, with support from the CF Foundation. The potential drug aims to open the chloride channels that do not function correctly in people with CF.


Again.....all donations go towards finding the cure that we all want SOOOO desperately, so that all CFers can live past 37 years of age, get married, have children, and grow old like the rest of us. Aren't they worth it?????
M
PS. I can't believe my lil' man is going to be 2 on Saturday!! =)
PPS. Thank you to everyone for all the great entertainment ideas for our walk. I really appreciate it;-)

First Pee Pee on the Potty!!

YEA!!! Lil' Chris went pee pee on the potty for the first time today!! I couldn't believe it!

He actually brought it up! He kept saying "Potty?" "Potty?" So I put him on and of course nothing happened. I thought he just wanted to play with it. I figured..."Maybe if I leave the room he'll go!" It worked!! He went!! I was SOOOO shocked!!

I tried again a couple of times later, but nothin:( Hopefully it wasn't a fluke. I'll keep trying and I'll keep you posted.

My big boy;-) I can't believe he will be 2 years old in 4 days!! Where did the time go?
M
PS. He must be getting some molars. He keeps putting his fingers in his mouth and likes to chew on them. Please pray he doesn't put any germs in his mouth. That cough is still lingering. It sounded like he needed to clear his throat this morning and coughed a couple of times today. I'm not too worried yet. Hopefully it is just allergies.

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