Day 4 CF Awareness / Are you a CF carrier??

 Meet Aden...a new CF team:)

 Meet Aubrey...another new CF team for this years walk:)

May is CF Awareness Month, so I will try to update everyday this month. Here is Day 4...

Did you know that more than 10 million Americans are unknown, symptomless carriers of Cystic Fibrosis?? They carry the defective CF gene. My 2 sisters and my sister-in-law and my husband and I are all CF carriers. None of us ever knew until my middle sister was tested in 2003 while she was pregnant. Then my older sister was told during her 3rd pregnancy (they didn't do that testing with her first 2 pregnancies). My sister-in-law found out during her first pregnancy. Fortunately their husbands were not carriers. Both my husband and I carry the Delta F508 defective gene, which we found out after Lil' Chris was born. We never knew it until Lil' Chris was already conceived. Therefore, Lil' Chris was born with Double Delta F508, which is the most common CF gene. In order for someone to have CF, they must inherit a defective CF gene from both parents.
Each time 2 carriers of the defective gene conceive, there is a 25% chance that child will have CF, a 50% chance that child will be a carrier, and a 25% chance that the child will not have the CF gene at all.
The odds remain the same with each child. The severity and symptoms of the disease vary considerably due to different mutations of the gene. As of right now, we have been told that Ayla is not even a carrier! We are going to get her re-tested just to make sure.

We are all ready for our big CF walk tomorrow!!! My sister and her kids are here from NC and are going to walk with us!!! YEA!!! They were here for our very first Wooster walk, and now they are going to get to see how much our walk has grown:) I registered all my walkers that I know of, and there are about 80!! WOOHOO!!! It means sooooo much to have sooooo many support Lil' Chris. I can't even put our appreciation into words! And we have so many that donated but can't make it to the walk that we greatly appreciate too!!! THANK YOU ALL!!!

Here are the happenings for the walk tomorrow...

We will get there to set up around 9 or 9:30
Panera Bread will be there at 10:30 with yummy bagels:)
There will be fruit, water, juice, and lemonade
The Ambulance will get there around 10:30 and be there for the whole walk, I believe
The Fire Truck will be there from 11-noon
Pat Catan's Craft Table will be there at 11
Police Car will be there around 12:30-1:30p
Dr. Dave will be doing balloon animals
Domino's Pizza will arrive at 12:30
McDonald's cheese burgers and french fries will be there around 12:30
There will also be yummy cookies, chips, crackers, and more
After the walk, there will be many awesome prizes too!!! YEA!!!!

Hope to see you there!!!
M
PS. Please continue to pray for Tricia(adult CFer), she desperately needs new lungs, but is stable right now on a ventilator.

CF Update

Remember when I said I thought the kids runny noses were just from allergies??? Well, I'm thinkin they were colds now, b/c I'VE got a cold! Lil' Chris is STILL coughing some pretty nasty coughs. My guess it's from the drainage, b/c he is still stuffy. Ayla has had a little dry cough off and on.

So, I've got my mask on and am trying to stay away from the kids even though they have already had the cold. I really don't want it to start all over with them! It's so hard though, b/c my kids are so lovable. They keep asking me, "Mommy, I want to hug you and kiss you" or "Mommy, I want to sit with you!" It's sooooo hard for me to say "No, Mommy's sick. I don't want to get you sick." It breaks my heart to upset them;(

Lil' Chris is doing GREAT at preschool!! He LOVES it!! He is doing GREAT taking his enzymes before snack time!! Apparently he already has a girlfriend named Josie. All I hear is Josie this and Josie that:) "Josie is cute!" :) Boy do they start young these days;-) LOL!! I guess he takes after his momma;) LOL!!!!

Please continue to pray this nasty cough goes away soon. If it doesn't go away by the time this antibiotic is up, then the CF clinic will probably want to see him. We try to stay out of that place as much as possible, so not to catch any more germs/bacteria!!

Thanks,
M

CF Update / Update on us all:)

I thought I would give you a quick update on the family and Lil' Chris' cough...

1. Lil' Chris' cough is all gone!!! YEA!!! Praise the Lord!! This is the 2nd time he has had a cough and didn't need an antibiotic to get rid of it!! I'm really glad he never caught our colds too:)



2. Alya's cold has been gone and her cough too. Her new thing now is turning lights on and off...she is so proud of herself that she can reach them now;-) LOL



3. My husbands cold has been gone too. He is doing well and started his new job last week.



4. As for me, my cold has been gone too...sorry it's been so long that I've updated;) LOL! My back is all better too(it has been better for a while now...again, sorry for the lack of updates on myself;-) LOL! I've still been running everyday and I am up to 243 days in a row(except vacation days:) Woohoo!! It feels GREAT!!!
   

Since Lil' Chris turned 4 and learned how to unclip his vest buckles from his cousin R, I thought it was about time to teach him to put his Vest on all by himself. So now I tell him, if he wants to play Wii, then he has to put his Vest on all by himself and turn it on all by himself. Guess what?? He's done it a few times now!!! YEA!!! Gotta love the Wii;) The pic above is of him playing Wii Bowling after he put his Vest on all by himself!! He's getting to be such a big boy!!

I recently ordered him a new Vest, b/c the velcro on his other one kept coming undone. He used to take if off by undoing the velcro and stepping out of it, but now he can do the buckles. So now this new one should last us a long time:) Of course when I ordered the Vest, the hoses were fine, but the next day one of the hoses started coming apart...figures!! So I just ordered 2 new hoses too:) I can't complain though, that last pair of hoses lasted a pretty long time!

Yesterday he got his haircut AGAIN!! This kids hair grows sooooo fast!! He amazes me every time as to how still he sits and how he does everything the girl asks him to do. They always give him a ton of compliments:) That's my boy;-)

I hope you all have a wonderful holiday weekend and a safe 4th of July!!

M

PS. Coming soon...Disney pics!!....Hopefully edited...but maybe not;-) LOL!!!!

CF Fundraiser this Wed from 5-8p at Wooster's CiCi's Pizza!! / Cold Updates

Join us this Wed at Wooster's CiCi's Pizza between 5-8pm for "A Cure 4 Lil' Chris" and ALL who suffer from Cystic Fibrosis!!

A percentage of your receipt will go towards a CURE for Cystic Fibrosis and there will be a raffle for a FREE Applebee's dinner and a movie for 2:)

My next Wooster CiCi's Fundraisers for Cystic Fibrosis will be on May 5th from 5-8p, so save the date:)

As for an update on the kids colds.... they are doing much better and no major cough yet!!! PTL!!.....I, on the other hand, unfortunately caught their cold;-( It was inevitable. I should be all better by Wed for the fundraiser though, so that's good:)

See you Wed:)

M

Fundraising Award / New Vest and Hoses

Poster at the awards ceremony above...

Close up of Lil' Chris' pic on the poster:)...

New Pipeline chart...

The award I was given at the award ceremony:) YEA!!...

A few nights ago, Chris and I went to an Appreciation Ceremony on behalf of the Cystic Fibrosis Foundation. I was awarded for all my fundraising efforts and for raising the most money for the Wooster walk this past year!! YEA!! It's all thanks to YOU all who donated and to Kohl's for all the $500 grants for most of my fundraiser!!

So THANK YOU to:

• ALL my friends and family who donated
• ALL my awesome neighbors who donated, did a bake sale, and came to the walk:)


• ALL my Kohl's associates who helped out with all my fundraisers


• My boss, Bob, for letting me do Jeans 4 Genes days at work for 4 months and to ALL the associates who participated:)


• EVERYONE from the motorcycle run
  
• CiCi's Pizza for letting me do most of my fundraisers there AND for the 12 or 13 different CiCi's Pizza that did Pin-Ups for CF for the month of May.
• all the other restaurants I did a fundraiser at...Tumbleweed, Applebee's, & Friendly's.


• my MIL for setting up a walk in NJ for Lil' Chris and doing other fundraisers as well


• my sister, D, for setting up a walk in NC and doing fundraisers at her kids school and at a bouncy house.


• and ALL that made the walk a success!!

I couldn't have done it without you ALL!!!! CF WILL STAND FOR CURE FOUND SOON!!!!

In other news....I had to order ANOTHER set of hoses for the Vest!! I think that's the 5th or 6th time since we got the new blue Vest and it hasn't even been a year yet!! YIKES!! Hopefully they improve the new Vests soon. I also told them that the velcro on the shoulder straps are not sticking very well anymore too. They said to just order a new one and when it gets too bad, we can just change it. So we got the 2 new hoses and new blue outer shell the other day. I haven't washed the new shell yet, so here is a pic of what the old one was doing...(we had to keep the straps in the back instead of the front to make it tight, b/c it stuck better back there but would still pop off sometimes)....

Thanks again everybody for all that you do for Lil' Chris!! We love you all!!

M

Sprained Ankle / CF Update

Last night we got back from our vacation to go see all of our family and friends and for an awesome 4th of July party! Thanks Nancy and Al, we had so much fun on the 4th!!! I'm still uploading pics from our trip, so I will post them soon. For now, I will update you on what has unfortunately happened since we got home last night...

I was watching the kids play outside while my hubby was unloading the truck...he says I pack enough for a whole month instead of a week;) LOL So when he got done, I started to bring the kids inside because it was getting late. We went in through the garage like we usually do, and I stepped onto the first step(there are only 3 steps) and tried to lift Ayla into the house, but our door doesn't stay open and it was flinging back, so in order for it not to hit her, I stepped up on the second step to catch the door with my elbow and then I lifted her under her arms into the house. Then I went to turn around to get Lil' Chris and that's when I guess I forgot that I went up that extra step to catch the door and therefore I practically missed the last step. My left foot was turned sideways and caught the edge of the bottom step and then rolled and, well......I rolled with it;) LOL

I looked down in pain and saw that it was already swelling up. I didn't want to go to the ER, but my hubby convinced me and when our sitter got here, we went. Luckily it went pretty quick! We got there at around 10pm and were home before 11:30pm! I'm starting to get a little too acquainted with our ER. First, my miscarriage, then when my hubby popped his shoulder out, then my lil' nephew with an asthma attack, and now this!! That's a lot in just 4 years!!

Anyways, they took me right away, and then I got x-rays really quick, and then went to my room to wait for the dr. He said that it wasn't broken, but it was a sprain. He gave me an aircast to wear until I don't feel pain anymore . He said that I should be okay to go to work on Saturday, but I haven't been able to put any pressure on it yet, so hopefully tomorrow it will get much better. It is already bruising all over. Hmmmmm I wonder what shoes I'm going to wear to work;0 LOL The pic below is my aircast. Don't you just love the sock they gave me??? LOL It has non-stick treads on BOTH sides!!! Special;-) LOL

I have to say, Lil' Chris has been very good about supporting his Momma;) He saw the whole thing happen and started crying saying "Mommy?? Mommy??" It was so cute that he was worried about me. When my hubby helped me to the couch, he came over and told me that he would blow on it. I said "Ummmm okay???" with a puzzled look on my face. Then he went over to my propped up foot and started blowing on it to make it feel better;) Too cute! Not sure why that would make it feel better, but it's the thought that counts;) Before I decided to go to the ER, I tried to stand on it and when I stood up, Lil' Chris thought that I was standing on both feet and started jumping up and down saying "Mommy's foot is all better!! YEA!!" It was so cute, I hated to disappoint him;(

As for now, I'm am staying off my feet since my hubby is home today. Tomorrow I will have to take care of the kiddos all day, so that will be interesting. I'll let you know how it goes over the next couple of days.

As for a CF Update, this morning when Lil' Chris woke up, he was not himself. He was acting really weird and tired still. The tiredness is understandable since he didn't really get any naps all week while we were on vacation. He wouldn't eat anything and spit up a little bit and kept asking to go back to bed, so he did and fell back asleep for a while. Then he woke up and threw up and then went back to bed AGAIN! He didn't really get up until about 3pm. We did his Vest even though we were worried he might throw up again, because throughout the night and this morning he has been coughing a lot. We think it might be because we had a fan on in his room b/c it was hot in here. Does anybody else have that problem with their CF kid?? He hasn't thrown up again yet, but he still is not acting himself or eating, and he keeps asking to go back to bed, but hasn't gone back to sleep again yet though. I think he might be catching my cold. Ayla and my hubby already did;(

I'll keep you posted. Please pray for all of us to heal quickly.
M
PS. My hubby bought me a $10 Granny walker, I guess he got tired of giving me a piggyback ride to and from the bathroom;) LOL At least now nobody has to buy me a walker or cane on my 50th birthday!! =) LOL The kids are enjoying playing on it:)

HAPPY FATHER'S DAY!! / Rough Night;(

HAPPY FATHER'S DAY, DADDY!!!

WE LOVE YOU!!!

Love,

Lil' Chris & Ayla:)

I hope all the great Father's out there have a wonderful day today!!

HAPPY FATHER'S DAY TO MY DAD, MY FATHER-IN-LAW,

AND TO MY HUBBY!!

You guys are the BEST DAD'S IN THE WHOLE WIDE WORLD!!

WE LOVE YOU!!

Love,

M, Lil' Chris, & Ayla

Unfortunately my hubby's father's day didn't start off on the right foot today;( Lil' Chris woke us up at about 3am and was throwing up on and off until about 6am;-( Poor kid;( I feel so bad, b/c I think it was my fault;( He had a scandishake at dinner and then before he went to bed, he asked for another one. At first I was hesitant, but then I gave it to him anyways thinking the more calories the better, right?! Well, I should have gone with my gut and not given it to him, b/c that's A LOT of calories in a short amount of time. Poor kid, I felt so bad for him and for my hubby since it was father's day and he was up early and cleaning up throw up. Sorry honey;( At least I have a cool present for you later;) I love you guys!!

M

New Vest Questions / Update / Upcoming Fundraisers

I've been getting lots of questions about the new Vest, so I thought I would post the answers in case anyone else was wondering too:)....

To answer CF Momma's question about the new Vest having the air holes like his old Vest that blow out cold air:

No, it doesn't blow out the cold air, b/c it doesn't have those little air holes. We were told when he first got his, that only the little ones have the air holes. I forget why, something about the kids being so little. Maybe it's not as hard on them or something. I can't believe what a difference it makes in the noise though! I guess I just never realized that most of the noise was coming from the air blowing out of those little air holes! I just thought it was the machine I guess! I used to have to turn up the TV real loud so he could hear it, but not anymore:) YEA!!

Another question I had was if it was "harder" on him. It might be a little bit, but he doesn't seem to mind. Plus, it's probably better for him if it is harder!

Is this Vest for all ages?? Yes, I believe it is, except for the little kiddos. It starts in a size Medium. It comes in blue, pink, and black. We opted for the blue one since he is a boy and his old one was black:) *****UPDATE: YES THEY DO HAVE THE CHILD SIZE, IF YOU ALREADY HAVE A VEST, JUST CALL THE COMPANY AND ORDER THE NEW ONE AND THEY WILL SEND IT OUT TO YOU...THANKS CF MAMMA FOR CORRECTING ME;)*****

Only one of the hoses has popped of once that I know of. My hubby has been doing most of the treatments, b/c I was sick. They haven't popped off at all for me yet...other than in the video on the last post;-) lol

As for a little update, my cold is mostly gone, but my voice still sounds weird;( Ayla's nose started running yesterday:( and Lil' Chris and big Chris have been doing fine so far!! Please pray that Lil' Chris doesn't get sick. I wore my mask the whole time I was sick last week, so I'm not sure how Ayla even got sick! Stinks! We've been playing the game "Keep the Kids Apart." Oh what a fun game...yeah right! It's so hard!! They are used to playing together and it breaks my heart to have to tell Lil' Chris "Sorry buddy, but Ayla is sick. So you have to stay in this room while Ayla plays in the other room, so that YOU don't get sick too." He's usually ok with it when I explain it to him, but still......I just hate the fact that I HAVE to do it and that I HAVE to sanitize my hands between touching each kid. I'm sure every household goes through this to some extent. We just have to be extra careful, that's all. He's been doing so great, we just want to keep it that way:)

At 1:00pm today, me and 2 other local CF moms are getting together to get our picture taken at our walk site for the local newspaper. They did this last year too and it was a great article that they did. I'm sure it's going to be just as great this year too:)

This Thursday is my next CiCi's fundraiser for Cystic Fibrosis. If you're in town, come and enjoy some great pizza for a GREAT cause this Thurs at the Wooster CiCi's between 4pm and 8pm:) A percentage of each bill will go towards a cure for CF if they put their receipt in the jar by the register. We will have a raffle, and for the first time, I will be selling CF bracelets too, thanks to my Mother-in-law for getting them and sending them to me:)
So far, I have 4 Kohl's associates signed up for this event, so I just need one more and then we will get a $500 grant from Kohl's:) YEA!! We haven't missed an event yet, and I only have 3 more set up...

1. Thurs 4/22 at CiCi's in Wooster from 4-8pm
2. Saturday 5/1 at Hewitt Cowles Pavilion for our walk. Check-in is at 9am and the walk begins at 10am. There are a BUNCH of Kohl's associates signed up for this one:) Thanks everyone:)
3. Thurs 5/27 at CiCi's in Wooster from 4-8pm

I'm also having a fundraiser at Applebee's in Wooster on Wednesday May 12th between 4pm-9pm. You have to have the flyer though. I'll be posting the flyer closer to the date:) This one won't be a Kohl's A-Team event though. There is just nothing for the people to do. I don't think they let us walk around to each table and have raffles, so I may not even be there the whole time. I may just go for dinner with the family when my hubby gets done work. IDK, we'll see:)

I think after all these fundraisers I may take a break for a while. I've been doing 1, sometimes 2, EACH month since January. I'm beat!!! Not to mention all the planning for the walk. Maybe I'll do more fundraisers in the Fall:)

I hope to see you Thurs!!

M

PS. Some great things going on in our neighborhood...I'll share soon:)

300 Hours on the Vest/Cough Update/Chris' 30th Birthday

I can't believe my lil' guy has done 300 hours, yes that's HOURS, on his Vest and he is only 2!!! Poor guy...and he almost never complains about doing it too! I give him a lot of credit! I couldn't be prouder of him:) He hit 300 hours on 8/29 and the last time I posted when he hit 200 hours was on April 8th, so in under 5 months he did another 100 hours...it's hard to believe! We just do like it's nothing. It's just part of our morning and night routine. Here are some pics I put together over the last 6 or 7 months...

Make photo slide shows at www.OneTrueMedia.com

His cold is almost all gone I think. Yesterday it didn't seem like his nose ran at all, but today it was running a little bit. Over the past few weeks, I've noticed a little cough coming on. Since he got this cold, it has seem to hit him harder. Therefore, today I called our CF clinic and they prescribed an antibiotic over the phone. He will begin Augmentin again starting tomorrow and will take it for 21 days. Hopefully it kicks it out pretty quick and it doesn't come back again for a loooooooooooong time:)

A day after Lil' Chris got his cold, I got a cold, then Ayla got a cold the next day, and now my hubby has it;-( I don't know how she got it too! I was wearing my mask and sanitizing like crazy!! Note to self: Next time wear your mask BEFORE you get sick, so you don't get sick and spread anymore germs to the rest of the family!!

Yesterday was my husbands 30th birthday!!! This makes me sad, b/c that means I'm right behind him;-( We had a fun day off together and took the kids to Ramseyer's farm again just like last year(I think we are going to make this a tradition;-) I will post the pics soon. I'll also post the pics of his BIG birthday present!! I thought 30 was a big deal, so I wanted to do something special for him...a 2 day stay at Kalahari Resorts...it's America's largest indoor water park!! We can't wait to go, he was soooooo excited and surprised!! It was soooo hard for me to keep it a secret for so long! We usually tell each other EVERYTHING!! I feel so relieved now to finally talk about it with him and how I went and talked to his new boss to get him those 2 days off and everything!! He had NO CLUE!! So much fun:) Pics coming soon! Oh yeah, and I got him a Dairy Queen ice cream cake too...his fav;-)

HAPPY 30th BIRTHDAY DADDY;-)

WE LOVE YOU!!

M

Getting Closer to a CURE/Update/Vest Pics

Lil' Chris is still doing GREAT!! His daddy on the other hand...not so great:( He may have gotten what Lil' Chris had a couple of weeks ago...fever and all:( I never did get the results from Lil' Chris tests, so still not sure what it was that he had. I've tried to call the dr.'s a couple of times, but it has always been at the wrong time. I'll try again Monday. Please pray that Ayla and I don't catch it too...also that Lil' Chris doesn't catch it AGAIN!

We had a busy summer! 3 very long car rides! 2 to NJ and one this past weekend to Maine! We had a BLAST each time! Good thing our kids are like us and don't mind long car rides;-) Our trip to Maine took 17 hours in the pouring rain to get there and 15 hours on the way back! It was long, but the kids did GREAT!! Thanks mom for the DVD player for the car! They helped A LOT!! Not sure how we got along without it before;-) Thanks to all our Maine relatives that put up with us, we had a lot of fun!! The pictures are uploading now, so they will be coming soon;-) Here are some pics of Lil' Chris helping me pack up his Vest for the trip:) He liked sitting in it before I put the Vest machine in:) Then he tried to pick it up when it was all ready to go! It weighs more than he does, but it was cute watching him try to pick it up;-) He's such a BIG helper!!

Photo and video editing at www.OneTrueMedia.com

I got this GREAT email about a promising drug that I've talked about before. Well, we are getting closer and closer to getting it approved by the FDA!! This could be HUGE for CFers!! Here is the email I got and you can read more about it by clicking on the links highlighted in red....

Dear Lil' Chris' Mom,

We’ve reached an exciting milestone in the search for a cure.
One of our most promising potential therapies, VX-770, is moving forward in clinical trials.

This compound has the potential to be one of the first drugs ever to treat the basic genetic defect in cystic fibrosis.
VX-770 (developed by Vertex Pharmaceuticals) is already being tested in adults. This week, for the first time, Vertex initiated a clinical trial in patients aged 6 to 11. Once the studies are complete, the FDA will determine if VX-770 is safe, effective and acceptable for approval.

To find out more about VX-770, read the full story and our FAQs. You can also read a very exciting article in today's Xconomy, quoting CF researcher Bonnie Ramsey and highlighting the work of the Cystic Fibrosis Foundation.

This milestone would not be possible without your support, and we need your help – now more than ever – to make this drug a reality.

If you have CF, you can help by participating in the clinical trial. Learn more by calling the Vertex clinical trials hotline at (877) 634-8789.

You can also help support this and other lifesaving research by making a donation today.

Together we can make CF stand for "cure found."
Thank you for your support,

Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Isn't that awesome?!? Thank you EVERYONE who has donated to help find a CURE!! Your money is being put to good use! We are getting closer and closer to a CURE!

If you haven't donated yet and would like to, click here to help us get to a CURE! My personal goal is to raise $5,000 by the end of August. So far we are at $3,907.63!!! Please tell your family and friends and pass the word along to donate to help find a CURE for ALL CFers!! I think today I will send out my last email reminders for this year about donating. I encourage all CF bloggers to send their reminders one last time too. PLEASE, PLEASE, PLEASE DONATE TODAY!!

TOGETHER WE CAN MAKE CF STAND FOR CURE FOUND!!!!!!!!
Thanks,
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

Newspaper Pic Tomorrow

Tomorrow us 3 CF Moms in this area are getting together at the place where we are going to have our Great Strides Walk, and a photographer from our local newspaper is going to take a picture of us holding 8x10 pics of our son's. The article is going to talk about how the CF moms are holding pics of their CF kids, b/c the kids can't be together b/c of cross contamination. It's also going to talk about when and where our walk is going to be. I'm SO excited!!

I sent the commercial to our local TV station, but haven't heard anything yet. I'm not even sure if I will hear anything! They may just start playing it! I'll have to keep an eye out;-)

Pray for good weather tomorrow:)
M
PS. I just thought about the shirt I have...a while t-shirt with a pic of Lil' Chris doing his Vest and underneath it says "I Love Lil' Chris". Do you think I should where this instead of holding the pic?? Let me know Alma and Mary;-)

2nd Mother's Day with Lil' Chris & First one with Ayla:)

Photo and video editing at www.OneTrueMedia.com

Here are some pics of our day. Sorry they are a little bit blurry, we forgot our camera, so I had to use my cell phone for the pics and videos. They are still cute;)

I had a great 2nd mother's day with Lil' Chris and a great first mother's day with Ayla! It started off with Ayla crying at 5am, soaked the crib, and was hungry. It was GREAT!! I guess it's true what they say, mother's never really do get a day off;-) That's ok, I like spending time with the kiddos;)

When everyone woke up, they all gave me a Dairy Queen Cake, my favorite(we didn't eat it until night time though;-) Then they took me out to breakfast and then off to get Lil' Chris' FIRST HAIR CUT!!! It was SO cute!! He did such a GREAT JOB!! I was SO very proud of him!! He wanted to hold Daddy's hand, and needed a hug at one point, but he never cried!! Such a good boy:)

Then we went over to Babies R Us to get pics done. We got Lil' Chris' 2 year pics done, Ayla's 4 month pics done(both a little early;) and then we took our FIRST FAMILY of 4 PIC!! The kids did such a GREAT job!! All the pics turned out GREAT!! I'll have to share them later, b/c Chris will have to scan them in.

Then we came home for a little bit, then they took me out to dinner and then we went food shopping. When we came home, Lil' Chris somehow climbed into the bucket of toys all by himself while we were upstairs with Ayla. We came down, and to our surprise, he was standing in it throwing all the toys out! It was SO cute!!

Overall, I had a GREAT Mother's Day!! Thanks Honey and Thanks Lil' Chris and Ayla for the best 2nd Mother's Day Ever!!

I hope everyone else had a great Mother's Day too!! HAPPY MOTHER'S DAY!!
M

Thanks for the Birthday Wish:)

Thanks sis for the Happy Birthday Post:)

And thanks everyone else for wishing me a Happy Birthday;)

Right now my husband is making me dinner(and don't tell him I said this, but I saw him sneak in an ice cream cake when he came home from work today;) LOL
Isn't he the best! He even said he's going to stay up with Ayla tonight!! Right Honey???? LOL ;)Thanks again,
M

First Christmas Surprises!!

Did you see the first surprise??? I changed the header picture. Lil' Chris is 1 1/2 years old this Christmas and I am 8 months pregnant in this picture, but am not 8 1/2 months pregnant.

I usually NEVER EVER post any pics of myself, b/c I hate my pic being taken, and for other reasons too:) But I had to post it, b/c it was too cute how Lil' Chris just happened to turn and touch his baby sister(my belly:) I thought it was very thoughtful of him to include his baby sister in the family picture;) See...he is already looking out for his baby sis. What a good BIG brother he is already!!

I can't believe how big he has gotten since last Christmas!! I didn't really realize it until we compared them both. Here are last years Christmas pic...







MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!! Hope you all have a safe and healthy holiday:)

Oh yeah, did you want to know the second surprise? OK, the second and BIGGEST surprise is........coming at midnight;) LOL!! Sorry, I couldn't resist:) Check back at midnight or check it out tomorrow:)
M
PS. Take a good look at the pics with me in them, since they won't stay up too long:)

Our First Trip to the Pediatrician

For the first part of our story, click these...
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call
5. Our Options
6. The News
7. The Best News Ever!
8. The Big Question
9. Sharing the Good News
10. It's Baby Time!!
11. The Birth Part 1
12. The Birth Part 2: Happy Birthday Lil' Chris!!

Last time, I left off when Lil' Chris was born, so here are the first couple of weeks following...

The whole time we were in the hospital after he was born, they kept saying he was doing great! He was eating and peeing and pooping like any other baby. They told us that one sign of CF is when they don't poop and then problems arise, but he had no problem with that. So of course we only thought the best, thinking and hoping and praying that he didn't have CF.

When we finally went home, he was so peaceful and quiet. He was even quiet when he was born, he barely cried! A week went by like nothing was wrong. Then we got a phone call saying that they only found one mutation of the CF gene. Which meant he was only a carrier. So of course we were relieved, but they still wanted us to make an appointment with the CF Clinic for some reason. So the earliest appointment I could get was in another 2 weeks.

Then another week went by. I started to notice that he was hungry A LOT and pooping A LOT! It seemed as though he would still be hungry as soon as I just got done feeding him! And then when I was putting him in the outfit that he wore home from the hospital, it seemed a lot bigger on him than it did 2 weeks ago. They always say that babies tend to lose weight, so I thought maybe that was why. Then we got another phone call saying that the lab messed up the first time. They actually found 2 mutations. But they wouldn't tell us anything more than that. They just said to keep the appointment we had scheduled at the CF Clinic and they would explain everything there. So, we still weren't sure if he had CF or not. We hadn't done a lot of research on it yet, b/c we wanted to believe that there was nothing wrong with our baby.

The next day, we went to the pediatrician for his 2 week check up. The nurse weighed him and everything, and then we waited for the doctor to come in. When she did, she asked us lots of questions. I told her how he is always hungry and then she asked how many times a day he was pooping. We said like 10. The look on her face....I knew something was wrong. She practically ran out the door, leaving us to wonder what was wrong. Then she flew back in asking us if we could go to the CF Clinic in about an hour. Chris and I looked at each other like "Why? What's wrong with our baby, he seems fine?" We said "I guess", but it takes about an hour to get there, so we had to go straight from there. I asked her what the problem was, and she said that he shouldn't be pooping that many times a day. Of course as new parents, we had no clue. We just thought all babies pooped a lot! She also said that he had lost over a pound in weight since he was born, which was also a sign of CF. I came right out and asked her before we left, if she thought he had CF, she didn't really give an answer...which scared the crap out of us! Before we walked out, she looked at us and said, "I can't believe how well you guys are taking this!" We just looked at each other like "Taking what? You haven't told us anything! We don't know what's going on!"

So, we rushed out of there and off to the hospital we went. We didn't know what to think. I just remember Chris calling his family and me calling my sister D and telling her to pray and to call my dad and tell him to pray that nothing was wrong and that he doesn't have CF. But deep down, Chris and I knew something must be wrong if the doctor was panicking and made us rush to the hospital.

I think we were just both numb and didn't say much the whole loooooong ride there.
M

Calling All CF Moms!!

It's been awhile since our last CF Mom meeting, mainly due to my nausea b/c of the pregnancy. So, I'm finally starting to feel better and thought it was time to do another CF Mom meeting! I already talked to Daniel's mom and she is all for it! Now I just have to get a hold of the other moms and decide which day would be best and where. Hopefully we can start strategizing for next years Great Strides Walk too, since we are going to start one here in our town. YEA!!
I'll keep you posted,
M

Clarification

Today, I thought I would write a response to the responses I got from one of my last posts. I think a lot of people took it in a way that was not intended. That's one thing that makes blogging so hard, you can't or don't always get the whole story, so then assumptions may get made. And you know what happens when you "assume!" LOL

From some of the emails and responses that I got, it seems as though some may think that I'm in some kind of depression and am not happy with my life and don't trust God and played the blame game and so on and so on. But to set the record straight...I was just having a bad day(CF Moms get those sometimes. Am I right CF Moms? And I can't guarantee that this will be the last time I post a "depressed-like" post like that)

...I, we, are VERY happy with our life! I thank God everyday for all that he has given us and is about to give to us. I feel very lucky to have the life that I have! He has blessed us soooooooo much! We may not have everything that we want(like a stay at home job), but who does? That doesn't mean that we are not happy with all that we do have and all that God has provided for us! We know that God has a plan for us, we just may not know what that is yet!

I don't blame anybody but myself for not finishing college. I could've went away to the same college my sister did, but I chose not to. Now that I think about it, I'm glad that I didn't go, b/c that probably would've meant the end for me and Chris(long distance relationships never work;). Who knows... maybe if I went, I would have money, but I wouldn't have Chris and I wouldn't have Lil' Chris. Therefore, I'm glad I didn't go. I'd rather be poor and happy and in-love and have Lil' Chris and the wonderful life we have together....than be rich, unhappy, and not have my 2 Chris'.

One thing that I love about my husband is that he loves God. God is #1 in our life and we trust Him. We trust Him every time we step out these doors, every time we hand our baby over to the sitter, every time Lil' Chris gets sick...ALL THE TIME! Yes, we don't go to church like we'd like to, but I believe God knows our hearts, and understands why. I can't tell you how many times my sister D and other people have told me that their kids have gotten sick over and over again from being in the nursery at church. The other kids in the nursery can't help it if they are sick, but it's just not good for Lil' Chris to be exposed right now. For other families, that's fine, it's ok if they get sick. But for Lil' Chris...it's different. The more colds he gets......the shorter his life may be! Is that what you want? No, nobody wants that. His life is short enough as it is! That is why, we feel it to be our duty as Lil' Chris' parents to protect him from a VERY touchy feely church. Why they have all the pastors come around and shake and hug everybody and spread all kinds of germs, I don't know. Maybe we should find another church. But we really like that church, and feel at home there.

So, we hope that everyone respects our decision to keep Lil' Chris healthy for as long as we can by keeping church in our hearts and in our home until Lil' Chris is old enough to understand and be able to go to church classes(won't be long now:) and learn more about our Lord and Savior(I know we can't teach him everything at home;). I know what you are thinking..."But what about you and Big Chris meanwhile?" Well, Chris and I are old enough to be able to have a relationship with God even if it is outside of the church. We both love the Lord with all our hearts, and love the relationship we have with Him, and trust in Him with EVERYTHING we do, even trust in Him to guide us when making the decisions we make.

I don't mean to sound harsh, but I hope this clears things up a little bit better,
M
PS. We must be doing something right, b/c Lil' Chris has only had 1 cold in the last 14 months and has not been hospitalized at all yet.

I'M SORRY BABY!

......As tears of failure roll down my cheeks as I look back on my life after writing the last post, I feel I must get it all out and write this to Lil' Chris. I may regret it later, and it may just be the pregnancy hormones, but I feel as though I need to tell him this. Even though he doesn't understand it now, he will some day when he reads it......(I'm sorry if this offends anybody in any way, that is not my intentions)

Dear precious Lil' Chris,
I love you soooooooo much!! I'm sooooooo sorry that I can't be there for you everyday by being a stay at home mommy, and I can't provide for you like I want to. If I could go back and change things I would. I definitely wouldn't ever change having you, but I would change so many other things. I would've picked a good paying career path and finished college so that money wouldn't be a problem. I would've encouraged your father to do the same, so that I could be a stay at home mom and keep you away from those pesty germs for as long as I could, that is, until you went to school.

But now that I can't go back in time, I feel as though I have let you down. I only wish that back then when I was making the decision not to finish college, that I would've thought of the future ...YOU!

But instead I was young and stupid. I let money and my parents divorce that was going on at that time interfere with my decision. Or maybe I used it as an excuse. My dad said that he would pay for me to finish college, but he had just gotten done paying for my sister's VERY expensive private college of 4 years. And then my mom sprung the words of divorce on him. I knew then, that I couldn't take any more money from him after all the money my mom was about to take from him. Plus, I looked to my older sister(D;), who didn't finish college and was making great money and was on a great career path. So, I thought..."Well, if she can do it, than I can too!" STUPID MISTAKE!! You have to get into the right company at the right time for that to happened, and I obviously never did.

So, hear we are today. Even though I know how important it is for me to protect you and keep you away from those pesty germs....I have no choice but to hand you over to complete strangers to care for you while we go work hard to make pennies. I'M SO SORRY BABY!! All we can do now, is to pray that something turns around for us....That an opportunity opens up.... That you don't catch too many colds meanwhile.

All we want for you, is to have the opportunity to live as long of a life as possible and be happy and as healthy as possible. I promise, no matter what, I will keep you away from those pesty germs as much as I can. Even if we have to live in a box so I can stay home with you and you don't have to be around other sick kids, we will make it work. I know I can't always keep you away from other sick kids, like when you start school, but I just feel as though it is my duty as your mother to keep you from those germs now, when I can.

I LOVE YOU MORE THAN WORDS CAN SAY! Please forgive me for the stupid mistakes I have made:(
Love,
Mommy

I love being an Aunt...

I know I said I would post a slideshow of pics from our vacation... I am working on it but it's not quite ready yet & I've been wanting to comment on my sister's big news!

I'm so excited for them!! Isn't it awesome when God makes a decision for you & takes the stress right out of your hands? I've been there & I remember the feeling of relief when I realized I could just begin moving forward on the very clear path He set for me. I feel like that is what He's done for M & Big C. Granted it might be a little sooner than they planned for baby #2 & it is only natural that they be concerned about the CF aspect, but God has a plan! It is so comforting to know He is in control & has plans to prosper us & give us hope (Jeremiah 29:11). I know M & Big C believe that with all their hearts & rest in the peace that comes with faith God & His will for our lives.

Please pray for M right now as she isn't feeling well. As far as I know, she's not nearly as sick as she was with Lil Chris but it's still tough to feel nauseous all day long. I've said before how much Big Chris loves kids & I can only imagine how excited he must be. When M is feeling better I'm sure she will give us all the details on how she shared the news with Big Chris & how they're doing now.

Thanks for listening! Coming soon: Vacation slideshow!!