Our Christmas Pics / Video of Santa :) Merry Christmas!!!

We got our Christmas pics done the other day and here they are....(Thanks Dee, Kevin, & Lil' Kevin for Ayla's cute dress:)

My Ayla Bella:)....

These kids are just tooooooo cute!! I can't help but spend a fortune on pics!! LOL...

Our annual family pics:)...

My BIG boy...

Here is a video of the kids in the final days before Christmas and meeting OUR Santa:) It's long, but just too cute not to post;-) I love it when they sing Happy Birthday to Jesus:)

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I hope you enjoyed them!! MERRY CHRISTMAS!!!!!!!

M
(now it's time to see the wonderful surprised looks on my kiddos faces when they see all their awesome gifts!!.....that's MY favorite gift;)

CF Update / 1st Christmas Musical

I can't believe it's been since Dec 5th that I last blogged!! Sorry about that:)

The kids and I are all doing great! Our colds are all gone and Lil' Chris' cough is much better. He just seems to cough the most in the morning, but it's not as junky sounding. Once I make him blow his nose, it's not as bad. The other day before school though, he was coughing so much that he threw up 2 times! It wasn't a bad cough though, more dry than wet. Once he blew his nose, he was fine. I HATE THICK, STICKY MUCUS!!! I'm sure Lil' Chris hates it more than me;) lol

We are all ready for Christmas and can't wait!! The kids are VERY excited! I told the kids(mainly for Lil' Chris' sake) that if they finished all 3 meals of the day, then they would get an early Christmas present...so far, they have only gotten one and I started this 10 days before Christmas;) LOL

I sent about 40 Christmas cards out and I wish I could send one to all of you, so here is YOUR card;-)...Merry Christmas!!



On Dec 13th, Lil' Chris had his 1st Christmas musical!! YEA!! He did such a GREAT JOB!! I of course sat on the wrong side of the room, but I tried to get pics and video as best I could with Ayla not sitting still on my lap;) LOL Check out the video below, he is the one all the way to the right in the red shirt. After they sang, they got a special visitor who Lil' Chris just had to go see like every 2 minutes!! LOL I can't believe Ayla actually sat on Santa's lap too!! She even told him what she wanted for Christmas! She wants a pink scooter and he wants a blue jeep, but since then it has changed to a spiderman bike. LOL I think he'll be happy with what Santa got him;-) LOL

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I hope you all have a VERY MERRY CHRISTMAS AND A HAPPY, HEALTHY NEW YEAR!!!
M

CF Links / Colds / Coughs / Christmas decor :)

Sorry it's been a while since I've posted. You know that cold that the kids had....well, I ended up getting it too unfortunately. It lasted over 2 weeks!!! It was almost all gone after the first few days, but then we went to Kalahari (thank you Oma and Opa for the early Christmas present!!) and walking around outside with a wet head probably wasn't a good idea. Then the next night I had to stand outside in the freezing cold for 2 hours at work for the Black Friday sale working the loooooong line, which I'm sure didn't help my cold go away any. BUUUUUT...it was all worth it, b/c Kalahari was AWESOME and Black Friday was a HUGE success!! I helped lead our store to be #1 in the district and #2 in the REGION!! WOW!!! I even opened 40 credit apps myself!! I was #1 for the day!! It was GREAT!!!

The kids are still getting over their colds too. We are all in the cough stage, esp Lil' Chris. He had the most mucus/snot I've ever seen!! He even threw up, b/c he was coughing up so much! He would blow his nose and it would just keep coming and coming and coming!! Poor kid. He's been coughing a lot the last couple of days, so a call to the CF clinic may be in order soon if it doesn't go away. Extra Vest and Acapella times are a MUST right now!

I bought some kids vapor rub(sorry I couldn't get the pic to work right side up for some reason;) and put it on their chests last night and at first Lil' Chris couldn't STOP coughing! I thought "Oh GREAT! What did I do??" But then it settled down and he slept all night without getting up to cough, PRAISE GOD!!! Ayla too!!! I wasn't sure if CFers could use a vapor rub, so I asked on CysticLife and got some responses that said it was ok b/c it opens up the airways to breathe easier so they can get some sleep. Sleep if very important for CFers, b/c they use so much energy(and calories) when they are coughing all the time. I'm just glad it worked and I'll ask our dr about it too. Thank you to those on CysticLife for answering my question so quickly:)


On a good note...I got all my Christmas shopping almost all done and 95% is already wrapped and ready to go under the tree Christmas morning:) The kids helped me decorate the Christmas tree yesterday, which was a lot of fun:) How do you like our new stocking holder(see pic above;) Daddy finished putting up all the lights outside too! The kids LOVE driving around our development all the time to see everyone's lights:) Thanks neighbors for all your awesome lights!!! :) They look GREAT!!

Below are some links that I have been wanting to post, but forgot about;) It's some good info tho, so check them out!!

Thank you everyone for all your prayers!! Keep them coming that we have a "healthier" Winter and that Lil' Chris' cough goes away soon all on it's own;-)
M

http://www.timesreporter.com/news/x669417231/Phila-native-making-a-difference-for-cystic-fibrosis-patients

http://www.cbsnews.com/8301-504763_162-20129258-10391704/new-cystic-fibrosis-drug-shown-promising/

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/11-2-NEJM-Features-Kalydeco-Study.cfm

http://www.nytimes.com/2011/11/04/nyregion/with-cystic-fibrosis-kevin-dwyer-running-new-york-marathon.html?_r=2&ref=nyregion

CF Clinic Visit / New Acapella / 2nd PFT

Lil' Chris had his 3 month check-up today at the CF clinic and he had some GREAT RESULTS!!! THANK YOU ALL SO MUCH FOR ALL YOUR PRAYERS FOR HIM!!!

-Lungs were clear!!!! WOOHOO!!!!
-His weight has been stuck at 38 for the looooongest time and he finally gained some weight!!! He was 40 lbs and 2 oz!!!! I was completely SHOCKED!!! I actually made the nurse weigh him again to make sure;-) LOL I guess that eating sticker chart really helped him gain some weight!! I know it DID help him to eat more...he now eats pizza and chicken nuggets again!!! YEA!!! I couldn't believe it the other night he ate 2 WHOLE SLICES OF PEPPERONI PIZZA!!! WOW!! That's a first!!
-His height 3 months ago was 42 3/4, this time it was 43.5!!! Next Summer he will def be able to go on all the 46" rides if he keeps this up:)

He did his second PFT today and he did AWESOME!!! He blew a 94%!! Last time I think it was an 83%. He sure did make me proud getting up there and putting the nose thing on all by himself and just blowing away:) He did such a GREAT JOB!! Click here to learn more about PFT's. Ronnie shared some great info on his blog and did a video of him doing one. He is an adult CFer who recently had a sweet baby girl:) She is so adorable!! Congrats Ronnie and Mandi!!

His doctor said everything looks great and not to change anything!! So we are still going to do 3 enzymes before each meal and snack, 15mg of Prevacid each day, 1 Aquadek, Omega 3 + Viatmin D, Vita C, and Vest 2 times a day for 30 minutes each.

As I was asking the doctor all my questions;)lol, I mentioned the Acapella, and next thing I knew, they were bringing one in for him to try! The PT said that they usually start them on it around 5 or 6, but that she would try it with him and see how he did. To her surprise, he did GREAT!!! She said that some 4 year old's don't have the attention span or capability of following the directions, but he definitely did!! WOOHOO!! GO CHRIS!!!

I asked if he needs to do the Acapella after every Vest therapy, and she said not if I think he doesn't need it. It would be a good idea to have around in case I hear him rattling like he needs to cough something up but can't, or if we go somewhere and we can't take the Vest. For after the Vest, he would do 1-2 cycles of 5 breaths followed by 2-3 huff coughs to clear any mucous. If we use it instead of the Vest, then he would do 5 cycles of 5 breaths followed by 2-3 huff coughs. You'll see him do it in the video below.

I wasn't sure how his visit was going to go today, b/c on Monday he woke up with a sore throat and he was still even complaining of one today. The doctor said his throat looked ok though. He doesn't seem sick at all. His nose was runny the last couple of days, but today he blew it only once after his bath! Ayla was a little stuffy yesterday and today, but no hard core cold as of right now for either of them. I'm praying it doesn't spread anymore and that this cold or whatever it is goes away fast, b/c Nathan is coming next week and it would be dangerous for him since he is still on chemo. Pray for a healthy visit and that Lil' Chris doesn't develop a cough from it like he usually does after a cold!! I'll let you know when we get the throat culture result back, praying for a CLEAR result!!

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Thanks for the continued prayers and please don't forget about baby Chaia. She is doing well, but still has a long road ahead of her. Also, if you could say a prayer for Blake, a 3 year old who had a tumor removed today. He used to go to our church. The tumor was the size of a melon. Thanks so much!
M

Mommy's Milestone / New Challenge

Today marks a BIG milestone for me!! YEA!!!!

I wrote all about it on my other blog www.thechallengediet.blogspot.com. Click that link to read all about it...just do me a favor...don't look at my before and after pic;-) LOL!! I should do another after pic since it's been 2 years since the last, but I never get my pic taken...I'm usually the one taking all the pics;) Oh darn;-) LOL!!!!

Enjoy laughing at my pics;) I'm actually pretty proud of them in some weird way though...they were taken only 2 months apart!! OH YEAH!! ;-) LOL!!

A little tip...hover your mouse over the verse to read it and click "more" in the little box to read the whole thing.

What are YOU going to challenge YOURSELF to do EVERY DAY for the next 1 year from today???
What kind of example are YOU setting for YOUR kids, whether they are young or old, near or far???

Think about it and make the commitment to yourself TODAY!!! All it takes is DEDICATION and CONSISTENCY!!! (you can let me in on it if you want, just leave me a comment or email me;)

I wish you the best of luck!!
M
PS. If you want to leave me a comment, you may have to do it on this blog instead of my other one. I have had problems in the past with people not being able to leave comments on that blog. Sorry.

1st School Pic!!!

Lil' Chris' 1st school pic(or maybe I should say preschool pic;) I get a kick out of it every time I look at his right hand;-) LOL

Thanks for all the prayers for a healthy school year!! So far, only one cold and one lingering cough!!
M

Our Future CF Story / When the Light Meets the Dark / Pray for Chaia

Sweet baby Chaia, and Ben and Shaina really need our prayers!! Today(Wed) is a big day. They may have to let her go. Click here to hear it straight from Ben, he talks about it at the end of his video.

He has a great message in his video too. I know I fell into one of the groups that he was talking about, b/c on this very blog I said "Why do bad things always happen to good people?" I know it's not biblical in my heart and my knowledge of the Bible, but it's usually the first thing that comes to my mind for some reason. We live in a world thinking that if we live a good Christian life and are good people, than nothing bad will ever happen to us. That's not at all true! Like Ben said...Faith leads to Salvation, which leads to Trials, which leads to Worship. There will always be trials...some small, some big. It's what we do and how we handle those trials that makes the difference. Some Christians get derailed, some come out an even stronger Christian than ever before!

Ever since I first heard about what was happening with Chaia and I saw how Ben and Shaina are not staggering in their faith but are becoming stronger even as their only child possibly faces death, there is just one song that comes to my mind. Every time I hear it, I think of them. It's by a Christian band called Tenth Avenue North, and the song is called Healing Begins. Click below and read the words, it's truly amazing...


"Now you come to where you're broken within...the light meets the dark." To me, I interpret this as when something bad happens to us or someone close to us like death of a family member or a diagnosis of your child who may face death soon or later... you may feel "broken within." You're heart breaks so to speak. This bad thing is the "dark" which could easily get us down or overcome us if we let it. It's like were are traveling in the light and then BAM all of a sudden we meet the dark. Are we going to let the darkness overcome us? Or are we going to let our light shine even brighter? Are we going to let God's Will be done whether it's the outcome we want or not?? This is very hard to put into words and maybe I'm not making any sense, but it's been on my mind so much lately that I wanted to try to put it into words. To me, Ben and Shaina are letting their light shine through this dark time. They are standing FIRM in their faith in God and are bringing people closer to Christ even in their darkest time. Now that's what I call a true Christian!!

So I ask you...when your light meets the dark, how do you react, or how are you going to react??

The dark for me was when my son was diagnosed at 2 weeks old and we were told that he will be in and out of the hospital and has a 50% chance of living to age 37. That was a very dark day for me and it still is every day just knowing this fact. But I don't let it get me down. I never really was one to question "why" God did this to our family. I know that if I didn't have God in my life, I would be an absolute mess!! I'm VERY thankful that my parents raised me in a Christian home and went to church every week and even sent me to a Christian school all my school days!! (Thanks Mom and Dad, you're the best:) Along the way, I learned not to question God. He has a reason for everything He does in our lives. This is His Will. The question is...what am I going to do with it, or what is Lil' Chris going to do with it as he gets older?? It doesn't even have to be me or Lil' Chris, it could be Ayla or my husband or a complete stranger that heard of Lil' Chris' story that may carry out God's Will! Only time will tell.

I always say "Everything happens for a reason and only time will tell what that reason is." Did something in your life ever happen and you think "Why, what, huh??" and then years later you go "Ohhhhh, that's why!" For example, my husband and I moved 2 weeks after our honeymoon 8 hours away from both of our families. "Why, what, huh??" Then 4 years later, Lil' Chris was born and diagnosed with Cystic Fibrosis and we found out CF is VERY expensive. Guess what?? This state that we just happen to move to covers EVERYTHING!! "Ohhhhhhh, that's why!!" I thank God He moved us here! I look forward to fulfilling His Will in whatever way He wants me to...whether it be here on this blog, talking to others at my CF fundraisers, or just anybody I know, or even a complete stranger! I believe he put Cystic Fibrosis in our lives for a reason...so we could fulfill His Will. I actually feel honored that God would put His trust and faith in us to fulfill His Will, and whether the outcome of our CF story is what we want or not, I pray that we all SHINE THROUGH THE DARKNESS!!

Some may think I'm crazy and that I shouldn't be writing this in my blog, but different scenarios have played out in my mind for a long time now. All different ways that God's Will may be filled through our CF story...
1. I picture myself standing in front of a crowd, maybe a church or school or something, and I tell the story of Lil' Chris. How he was a Great Christian and even though he had a lot of dark times, he still shined through them by telling others about how great God is and by praising Him all the way up until his dying day. I know, I know...that's awful to think about, but for some reason I do. Maybe this will be God's Will?? Maybe He is preparing me?? I don't know. I pray it's not and that Lil' Chris lives a long and happy, "healthy" life.

2. Ayla doing the same as me in scenario one. (I can't really see my husband standing and speaking in front of a crowd, sorry Honey;) lol! Ya never know tho, maybe you'll shock me someday:)

3. Lil' Chris himself speaking in front of a crowd as a fine handsome gentleman in his 20's, 30's, 40's and older, telling of his hard CF story and how even though he hurt and had a hard life, he never once questioned God, but yet praised Him through all his dark times.

4. The best of all....Lil' Chris traveling the world telling of his "miracle" CF story!! How God chose him to be completely healed and go and tell others of God's healing and bring others to Christ through him and his "miracle" CF story!! I LOVE this one, even though I would miss my baby traveling around the world, but if it meant no more pain and suffering for my son, I wouldn't mind...thank God for Skype;-) ....or if he would let me, I would travel with him;-)

So do you think I'm crazy for thinking these things?? I don't know...I've just always felt that God has something GREAT in store for our family! I feel that I give a little testimony every time someone asks me about Lil' Chris or if I tell someone about Lil' Chris and his CF. I tell them of all the bad/dark things and then I always end with how great Lil' Chris is doing and how thankful we are to God! WE LET GOD'S LIGHT SHINE THOUGH OUR DARKNESS!!!! I challenge you to do the same:)

Thanks for letting me get this off my chest:)
M
PS. Lil' Chris is 4 years old and has not been in the hospital once, even though the doctors expected him to be at least once each year. Also, he has not needed any nebulizor's or breathing treatments, which is truly AMAZING! God is GREAT!! He is able to perform a miracle and heal Lil' Chris completely of his Cystic Fibrosis!! Lil' Chris has a lot of people all over praying for a miracle for him. Thank you all for your prayers and please keep them coming. If you could do me a favor and ask for a miracle for Chaia too, that would be fantastic:) Both Chaia and Lil' Chris are already "miracles" in my book;)

Lil' Chris' 1st Field Trip!!!

Today Lil' Chris had his 1st field trip!!! YEA!! It was at Ramseyers Farm!! We usually go there every year on my hubby's birthday, but this year we didn't so I'm glad I got to take the kids there on this field trip:) Since we had been there before and we knew what the weather was going to be like, rainy and cold, I knew how to dress them....warm clothes (long johns included), and pants and shoes that I didn't mind getting all muddy;-) Oh, AND break out the winter coats;) I had to take the tags off of Ayla's new coat! I didn't realize til the end that one small round tag was still on her hood;-) LOL!!! That made me laugh, and I had to laugh when Lil' Chris was trying so hard to buckle his Vest this morning, but he couldn't b/c of all the layers of clothes;-) LOL

The first thing they got to do was go on a hayride:) This was Lil' Chris and Ayla's 1st hayride!! They loved it! They got to sit on barrels of hay and see all the millions of pumpkins in the fields. Ya know...they don't do hayrides like the old days! I remember hay just thrown down and we had to sit on that and all the kids would throw it and it would get all over you! This hayride was nothing like that, but it was still a lot of fun and no sneezing and itchy eyes:)!!

After that, they got to play with all the fun different things they had and got to see the animals. We tried to feed the goats and get them to walk up the ramp to the food, but they were too busy eating hay. Those who have been there know what I'm talking about;) One of the fun stations was a bunch of pans and spoons to hit them to make music. Mommy had fun reading the paper and playing "Old McDonald Had a Farm" on them;-) LOL What?? It was fun;-) LOL

Then we all went into the big white barn and learned all about what grows on a farm! We learned how to plant seeds to grow pumpkins, how to make popcorn with a popcorn cob, how potatoes grow, and how to make potato chips!! They even got to try to eat a few freshly made potato chips!! It was pretty neat!! "White chips," as Lil' Chris calls them, are his favorite;-) LOL

That was the last activity and then we all went in the big red barn, had a snack, got our pumpkin and potato, and then walked through the very muddy parking lot. I took their muddy shoes off before entering my nice clean van, and that was it!! It was a little cold and it sprinkled at one point, but overall it was pretty fun!! Ayla was so cute...she kept her lil' hands in her coat pocket the whole time;) I look forward to all their future field trips:)

Check out some pics from today below...As I was watching this video with Lil' Chris after I edited it, Lil' Chris said..."I didn't take my pills with snack today!" He's got a good memory;-) LOL I didn't bring his pills with me, b/c I figured they wouldn't be having snack since it was only 1-1 1/2 hours long, but I was wrong. lol I just gave them to him afterwards since they had snack right before we left. If they would've had snack earlier, I would've just had to run to my van real quick;)

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Please continue to pray for a miracle for sweet baby Chaia... www.mustardrevolution.blogspot.com

Update on Eating Chart, Vitamins, Cough, Ayla's Potty Training, & Chaia

Here's an update on Lil' Chris and his new eating chart, softgel vitamin, and cough...(and potty training update for Ayla;)...(and baby Chaia too;)

This pic was Week 2 chart(I can't find week 1 as of right now, but he did have 15 stickers Week 1!! YEA;-) Week 2 he had 13!! We made him write his name next to his sticker if he ate all that we told him to eat, and write "sorry" if he didn't:)
This is Week 3, our current week. He's on track to get another prize this week too!!:) He has some catching up to do with writing his name. He told me today that he will finish them tomorrow...too funny:) He really likes the fact that he knows his letters and can write them! I've been playing games with him to help him with his letters and he has been doing AWESOME!! Writing them....well....that's another story. I think he writes his name the worst in his class....hence the writing his name on the chart... ;)
Here is a pic of his new softgel vitamin, Aquadex...
They are HUGE, but he never gave us a problem taking them:) In these pics I compared them to one of his enzymes that he has to take with everything that he eats. He swallows 3 of those red and blue enzymes at one time with every meal, so I guess one big pill is no biggy to him;)
He has to take the BIG Aquakex once a day, b/c his body doesn't absorb the Vitamins A, D, E, and K in the foods that he eats. This big pill is filled with those vitamins!! :) I actually like the Source CF softgels better(they are the same color and size), b/c they didn't smell as bad as the Aquadex and didn't give him nasty smelling burps;0 LOL! As long as he's not complaining, I'll keep getting the ones that the insurance covers.
As for Lil' Chris' cough...he still coughs every once in a while. I wonder if this is the start of his CF chronic cough;( I hope not. His next CF clinic appt is Nov 16th. I pray it's gone by then, so I don't have to ask.

His preschool teacher called us this past Monday saying he had a bellyache and was in the bathroom for a long time. So we picked him up. I think it's a good idea that we up his enzymes at school from 2 to 3 for snack time, b/c he has complained of a tummyache a few times after school. The CF nurse and I had decided on 2 enzymes at school, b/c he doesn't usually eat much in a short amount of time. It worked well in the beginning, but maybe now he is catching on that he doesn't have all day to eat when he is at school:) I'm pretty sure that his bellyache on Monday was from eating like half a stick of butter at dinner the night before though;)....calories are calories, am I right CF mom's?? :) I can remember melting a tbs of butter in his baby food. Can you imagine adding extra calories like that to everything you eat?? Yet...Lil' Chris is STILL only 38 lbs!!!! So frustrating!! Ayla is almost catching him! They just got their flu shots the other day and she is now over 33 lbs!!!

Speaking of Ayla;)....I started a potty chart for her for nap time and bed time. She has been potty trained during the day for a long time, since she turned 2 I think, but not at bed time and nap time. I give her a sticker and a piece of chocolate when she wakes up dry. I'm pretty sure she only does it for the chocolate though;-) LOL!! So far, every time that I have been home with her at nap time and left her in her big girl undies....she has woken up DRY!! YEA!!! At bed time, I still put her in her pull-up and she hasn't woken up dry yet;( I think she has realized now that if she has her undies on than she shouldn't pee in bed, but if she has her pull-up on than it's ok to pee. I guess I'm going to have to try night time with just undies to see if my theory will work or not;-) Wish me luck!! LOL!! I would like to get her 100% potty trained before she turns 3 in January. We started potty training Lil' Chris at nap and night time when he first turned 3. He caught on pretty quick and hasn't had any problems since!! It's been WONDERFUL!!! I'm hoping Ayla catches on quick too:)

Hope to see you this Sunday to pray for Chaia's heart to heal(see past posts for details)!!! Please continue to pray for Chaia, she needs us all!! www.mustardrevolution.blogspot.com
M
PS. HAPPY BIRTHDAY TO MY AWESOME DADDY:) I LOVE YOU!! You still look 40 to me;-)

Chaia Needs Us!! Join Us this Sunday 7pm!!

I just wanted to give a quick update on Chaia. The test results were not the best. The PET showed that 25% of her heart has irreversible damage and scar tissue. God is an Awesome God though. He is Able to reverse the damage for His Will to be done!!!!

Ben posted this on Facebook and I don't think he would mind if I shared it on here, the more the merrier!!......

Shaina and I will be gathering to pray for Chaia's healing and praise the God who makes dead hearts beat again. Please join us as we cry out together as the body of Christ. If you are too far away, join us in prayer on line by posting your web video prayer to Facebook! Chaia wins when we kneel.

Wadsworth United Methodist Church

195 Broad Street

Wadsworth, Ohio

Sunday, October 16 · 7:00pm - 8:30pm
www.mustardrevolution.blogspot.com

Keep Praying for Chaia / Lil' Chris Update

I can't stop thinking and praying for sweet baby Chaia....

My heart goes out to Shaina and Ben. Why does bad stuff always happen to good people???

Thank you to those who put Chaia's picture as your profile pic on Facebook yesterday:) Ben was right...Facebook never looked so cute:) If you missed it, the pic is above:)

Her big test, PET scan, that was going to be done yesterday got moved to today. Now it's just waiting for the results....sometimes that's the hardest part, other than watching your child suffer. This disease that she has hits a little home for me, especially since it's a genetic disease. Lil' Chris' Cystic Fibrosis is a genetic disease too.

Here is the link to Ben's blog again... www.mustardrevolution.blogspot.com

I also added a link to his blog on my side bar. It is at the top right of this blog below the header pic. You can see if there is a new post, or you can always click that link to get the latest updates on Chaia.

As for Lil' Chris, his antibiotic has been done for a little while now, but he still coughs every now and then. I'm praying it will go away on it's own. He is loving school (other than having to be woken up in the morning;) and he got invited to his first classmate birthday party!! YEA!!! He was very excited, esp since the invite was an Iron Man card...he apparently loves Iron Man right now;-) LOL

Thanks for all the prayers for Chaia and Lil' Chris,
M

Prayers for Chaia Needed!!

An awesome co-worker of mine, Shaina and her husband Ben who I used to work with also, had a daughter named Chaia 3 months ago. (BTW, Chaia is pronounced K-long i-short a;) She recently fell ill and has been in the hospital for I think a week in a half now. She has a genetic disease that is affecting her heart and other organs. I know I can't explain it all properly, so click Ben's blog link to read and hear the story straight from Ben.... http://www.mustardrevolution.blogspot.com/

I hope you get a chance to hear his video's that are really good about explaining everything. Ben and Shaina are the best Christian's I know. I know they have the faith that miracles can happen and God is able!!

Chaia is having some very important tests done today at 12:30 Eastern standard time to determine if certain parts of her heart is dead or just hibernating. Please say a prayer for all 3 of them as today is going to be very hard for them. The waiting for the results is going to be very hard!

Please pass this along to get as many prayers as possible for Chaia. Ben asked that everyone put Chaia's pic above as your profile on Facebook for today and ask your friends for prayers. Chaia really needs them!!!

Thanks,
M

Miracles DO Happen!!!

Had an amazing day at church today! The guest pastor was talking about how miracles can happen as long as we believe and ask God for them...I couldn't help but cry at the end when he said HE had Cystic Fibrosis and God healed him and took his CF!!! When I told him Lil' Chris has CF, he and the whole church put a hand on Lil' Chris and prayed for healing for him. I BELIEVE, DO YOU?? IF SO, PLEASE SAY A PRAYER FOR A MIRACLE FOR ALL CFers RIGHT NOW AND ALWAYS!!! Thanks!

I posted the above on Facebook and I thought I would share it on here as well:)

God CAN make the impossible possible!!!

Special thanks to my awesome neighbor Carrie, and Lil' Chris' preschool teacher, Ms Carrie!!! Thanks for being there for me today!! And thank you Ms Carrie for going and getting Lil' Chris so that the pastor could pray for healing for him:) You girls are the BEST!!!! :)

That's the closest Lil' Chris has ever been to another CFer, but for some reason...I wasn't afraid of cross-contamination!!

Whether the pastor's story is really true or not, I may never know...but I DO believe in what he said...I always have and I always will!!! Miracles CAN come true, we just have to ask God for them. Will YOU believe with me??? :)
M

Cough Update, Eating Chart, New White Vest Hoses, New Softgel Vitamin

Lil' Chris is still coughing;-( There are only 3 days left of his Omnicef antibiotic!! AHHHHH!!! So frustrating!! I just want his cough GONE!! We've still been doing extra Vest times too...that means he's been doing either 1 1/2 hours or 2 hours each day of his Vest!! Poor kid:( Today Ayla wanted to try his Vest:) She put it on and was so proud to be wearing it, it was so cute!! She kept saying she wanted to sit with Cas(Chris) :) She kept going "AHHHHHHHHHH" to make her voice sound all shaky:) LOL

If you didn't notice in my blurry picture above(sorry about that, but she was shaking, LOL;), we got white hoses for the Vest now! The old blue ones kept unraveling and I had to keep ordering new ones ALL the time! These white ones really seem to be MUCH better!! We haven't had any problems with them yet and we've had them for a few weeks now!! So if you are having trouble with the blue hoses too, just call the Hill Rom Vest company and ask them to send you the white ones. They told me that they are always working on improving the Vest, and that they were getting lots of complaints about the blue hoses.

On a good note...he has been eating more and trying new things!! YEA FINALLY!!! The other day he ate 3 plate fulls of fettuccine alfredo!! I know....WOW, right?! Lately he has been eating 5 whole chicken nuggets anytime we go to McDonald's too...who knew a lil' bbq sauce was all he needed;-) LOL!! Guess what???? Tonight he actually ate some of my Baked Ziti!!! I COULDN'T BELIEVE IT!!!! I distracted him by showing him Disney pics of his cousins who are at Disney World right now;) I'm so tricky, but hey....whatever works, right???? :) LOL

My wonderful hubby made an eating chart tonight for Lil' Chris!! YEA!!! Hopefully this will encourage him to eat more. He will get a sticker to put on the chart for each meal that he eats. Then at the end of the day if he has all 3 stickers, he will get to pick a prize!! :) His teacher at school uses this technique for good behavior and it seems to work, plus we used it when we potty trained him and it worked, so why not try it with eating?!?

At his last CF clinic visit, they gave us a bottle of SourceCF softgels to try instead of the chewable Vitamax. He was getting pretty tired of taking the chewable and it was a fight to get him to take it everyday. I wasn't sure if he would or could take the softgels since they are HUGE, but he took them like a champ!! I was so proud of him!! He's been taking them everyday since his last visit and he is VERY glad not to have to take the grape or cherry chewable Vitamax! When I tried to order the SourceCF softgels, they said that our insurance doesn't cover it and neither does BCMH. So I called and found out that a different softgel (Aquadek, I think it's called) which does the same thing is covered under BCMH, so I called the CF clinic and got the prescription changed and they are on their way! I hope he takes to them as well as he did the SourceCF ones:)

I'll keep you posted on his cough, eating chart, and the new softgels. Thanks for the continued prayers and keep 'em comin!! :)

M

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

Cough Update / 1,000 HOURS on Vest / Fair Week pics

Holding hands walking at the Fair....love it:)

Tomorrow it will be 10 days that Lil' Chris has been on this Omnicef antibiotic. I think that was all they wanted him on it for. Well, guess what?? HE'S STILL COUGHING!! It almost seems worse! We've been doing his Vest like 4 times a day too!! He did actually spit a couple of times after coughing!! YEA!! This is what CFers are supposed to do...cough and then spit, esp when doing treatments. The Vest shakes up all that thick sticky mucus in their lungs, and then they are supposed to cough it up and out. I've been trying to teach Lil' Chris this for a long time, but he finally is getting the hang of it...not as much as I would like, but it's a start:)

So anyway, I called the CF clinic to get a refill on the Omnicef. Please pray it starts to kick in soon! This is the first time we have used Omnicef and I'm not so impressed yet.

Tonight was supposed to be Lil' Chris' 2nd soccer practice, but last week AND this week both got canceled!!! Is he EVER going to get to play soccer?!?! LOL! Poor kid was so excited 2 weeks in a row and then was so disappointed:(

Lil' Chris hit another milestone...he has done his Vest for OVER 1,000 HOURS and he's ONLY 4 years old!!! WAY TO GO BUDDY!!!!! I'M SOOOOO PROUD OF YOU!!!!
Above he was at 994 hours, below it was at 1,001 hours. It's kinda weird how it is missing one of the zero's in it though. Is everyone's like this once it passes 1,000??


Lil' Chris and Ayla's 3 fish all died;( They won another fish at the Fair on Monday, but today when we woke up...it had died too;( I guess we aren't very good at taking care of goldfish. LOL! We even bought a bigger fish tank with a filter and everything! I think Daddy was more upset than the kids! He was the one who kept cleaning the tank all the time;) The kids didn't take it too bad. Lil' Chris was kinda excited about flushing it, and flushed before we could even pour the fish in!! LOL!!

I saw this tomato planter on clearance for like $1, so I bought it for the kids to plant the seeds and watch them grow. Here are our tomatoes!! Not sure what we are going to do with them, since it is not the season for them now, but it's fun to watch them grow:)
This week was my hubby's 32nd birthday! HAPPY BIRTHDAY HONEY!! It was also Fair Week, so we went on Monday and then tonight to check out the Demolition Derby. The kids had a BLAST!! If you click on the pictures, you can probably see them better:)

Lil' Chris WISHES he could get this BIG 4-wheeler!!!
"Ayla's PINK 4-wheeler"...everything is "Ayla's pink"...Ayla's pink bus will go to Ayla's pink school, etc...she's a riot!! :) She finally found a Pink 4-wheeler:)

Lil' Chris on Daddy's shoulders watching the Demolition Derby...

Ayla and Lil' Chris' noses were a little runny today. I think it is just allergies, but we are going to keep an eye on them. Praying it's not a cold.

As for me...I'm doing great! Got some great news and I have passed the 300 mark!! I have run on my treadmill for 319 days straight!! The only days I missed was when we were on vacations and I was away from my treadmill!! :) WOOHOO!!! Feels GREAT!! Pretty soon it will be one whole year!!!

Thanks for all the prayers for Lil' Chris,
M

Cough is worse;( New Antibiotic / Fundraiser Results for the year!!

I had to call the CF clinic today to ask for some kind of antibiotic, b/c Lil' Chris was coughing his head off all day!!! Before he started preschool, we thought his cough was getting better, but it definitely turned for the worse!! They said his throat culture result was the same as usual, MSSA, but I wonder if they took a culture today if it would be something different. I just hope that this antibiotic kicks in quick and he gets rid of this nasty cough really soon!

They prescribed a different antibiotic this time. It's called Omnicef. He has never had this one before and so far he really likes the taste of it:) YEA!!! It's not all goopy like the Ceftin. It reminds me more of the Augmentin, but it doesn't need to be refrigerated. He takes 5ml every 24 hours, so it's kinda nice not having to do it 2 times a day too:)

Lil' Chris and Ayla have had some runny noses too, but I think it is just allergies, b/c mine have been acting up too. Plus, I have shared food with them and I haven't caught a cold or anything. This is probably where the cough came from. The CF nurse said to do his Vest 3-4 times a day and do Albuterol every 4 hours as needed for his cough. I have been doing some manual CPT on him off and on, and it seems to make him cough more which is good to help him clear the mucus...if only he would cough it up and spit it out!! It reminds me of the old days when we used to have to pound on him every morning and every night as a baby;(

On August 31st, I had another CF fundraiser at CiCi's Pizza. This was my 9th one this year and thanks to my awesome fellow employee's, Kohl's gave a grant of $500 each time!! They also gave $500 for our CF Great Strides Walk too!!! So that brings the total to $5,000 just from Kohl's!!!!! This was our goal and it is the most we've raised in only ONE year from Kohl's alone for Cystic Fibrosis for Lil' Chris and ALL CFers!! I'm so proud to work with such GREAT associates and for such a GREAT company that supports such GREAT causes!!! The Lord really knew what he was doing when he put me at Kohl's 8 years ago! Now if only they would promote me.....;-) LOL!!!!
BIG THANK YOU to my girls at Kohl's who helped me out with the last fundraiser...

Patty K

Barb

Esther

Donna

We raised a total of about $680 that night!! Overall this year, our total from doing these CiCi's Pizza fundraisers is over $6500!!!!! Woo Hoo!!!! BIG THANK YOU TO KOHL'S AND CICI'S PIZZA AND MY AWESOME KOHL'S ASSOCIATES!!!!!!!!! THANK YOU THANK YOU THANK YOU!!!!!!!

BIG THANK YOU TO EVERYONE WHO WALKED & DONATED THIS YEAR & WHO HELPED RAISE MONEY FOR CF AND FOR LIL' CHRIS!!! Everything is not in yet, but our total should be around $9,000!!!! Last year we raised almost $7,000:)

Please pray Lil' Chris' cough goes away soon. I'll keep you posted,

M

1st PFT Video / CF Update

Lil' Chris' CF clinic visit went VERY well!! His appt was Wed 8/24/11 and he did his very first PFT!!!! I was soooooo proud of him!!! We were told that he wouldn't do these Pulmonary Function Tests until he turned 5 or 6, but I guess they thought he could handle it now?!?! Either that or it was just an excuse to get him out of the room so that they could ask me questions about his eating habits and such. I'll admit...I was VERY disappointed I did not get to go with him to do his first PFT;( I tried to, I told them I wanted to take pics, but they said they wanted to talk to me not my husband. Oh well, there is always next time, since he will be doing this test EVERY CF clinic visit for the REST OF HIS LIFE, which is every 3 months.

Anyway, while he was doing his PFT, I was talking with a specialist. She asked me lots of questions about what he eats and what he does when we try new foods with him(spits it out). She said to encourage him to eat more and try new foods, we should praise him and give him a reward or something. I told her we already do that. That was basically all it was. I don't think I needed to miss his PFT for something I already knew. Oh well!!

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You know....I always dreaded him having to do a PFT, but it wasn't so bad! He seemed to really have fun with it, since they have kid games associated with it. He had to blow up the hot air balloon, roll the ball in bowling, and blow out the candles on the computer screen, all just by breathing out really really hard and long! In the video, you can kinda see the computer screen and Lil' Chris blowing, but it got cut off a little when I uploaded it, sorry:( He kept stopping and taking a breath, but he still blew a 83%! Not too bad for his first time! Hopefully next time will be 100% or more:) Also, PFT's always worried me b/c of the possible cross-contamination, since every CFer in that clinic puts their mouth on it, but my husband said that they put a new mouth piece on for every patient, and the nose piece is always a new one too! Lil' Chris liked playing with the nose squeezer thingy afterwards;-) LOL

Since Lil' Chris did such a good job and didn't cry or anything when they did the throat culture, we took him to play mini golf!! Does anyone recognize the shirts Lil' Chris and I were wearing?? We got them from Josh at "Welcome to Joshland." Thanks Josh for the Awesome shirts, and Awesome CF blog, and Awesome videos that teach lil' kids about Cystic Fibrosis!!! (Click on that last blue line and you can watch Moganko do a PFT:) Lil' Chris LOVES watching his videos, b/c they contain a puppet to make it fun, named Moganko!! Plus, Josh is pretty hilarious too:)

His last CF Clinic visit was 5/18/11 (3 months ago) ......

Weight was 38 lbs. 6 oz .........now it is 38 lbs. 8 oz :( wish it was more, but dr. didn't seem like it was so bad since he keeps getting taller.

Height was 42 inches .........now it is 42 3/4

BMI was 47 % .................now it is 44% again, the dr. said this was still good since he keeps getting taller.

I was hoping for better results, but I guess I won't worry too much if the dr. isn't too worried about it. I'm still going to try to feed him as much as possible and get as many calories in him as I can. I asked the dr. if there is a certain amount of calories he should be eating every day, but she didn't really give me certain number. She asked what he was eating and then said to switch fruit snacks for snack to oreo's or another high calorie snack. By doing this, it could add a couple hundred calories per week, but he LOVES fruit snacks and isn't a big fan of oreo's, he does love chips though!

I just emailed the clinic to find out what his throat culture was, b/c he has been coughing quite a bit the last couple of days. Last night he had a hard time falling asleep b/c he kept coughing and coughing, poor thing;( It's kind of a mix between a dry and wet cough. I would say more dry than wet. He was complaining his chest hurt. To help him stop coughing so he could sleep, I gave him 2 puffs of Albuterol and a drink, and did some manual CPT. Today is definitely going to be a 3-4 times a day for his Vest!! I'm praying he didn't catch any bad bacterias. He's only been in preschool for 2 weeks!!! I wonder if he's going to make it the whole year without having to be put on a daily nebulizer treatment?!?! It's not looking so good;(

Thanks to Mary, local fellow CF mom, I went and bought an alcohol free hand sanitizer which is what they use at her CF son's school. She said that the kids use it every time they enter or leave their classroom. His teacher said that it cut down on the number of colds throughout the year, which is GREAT when you have a CFer in the class!! So Mary told me where I could find it, and I went and bought some for Lil' Chris' classroom. It comes with a MSD paper(I think that's what it is called) which basically says it's legal to have in the classroom if a health inspector comes in. His teacher was very receptive to it!! I haven't had a chance to ask her how much they have been using it though. I'll try to remember next time:)

Last night he woke up in the middle of the night throwing up a few times too. Not sure what from yet. My husband thinks maybe from all the coughing earlier, but he was throwing up like he ate some soy protein, which he is allergic to. I would say the hardest thing about Preschool is that I have no clue what he eats for snack! So I'm not sure if he was throwing up from something he ate at preschool or not. I'll have to start hanging around afterwards so that I can ask what they ate for snack, I guess.

Please pray his forceful cough goes away soon and that he won't need an antibiotic!
Thanks,
M

1st Day of Preschool Pics/Video's

As promised, here are some pics and video's of Lil' Chris' first day of preschool. Sorry it is so long, but I don't have much time to edit it b/c I have to go to work...

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He said he had a lot of fun and wants to go back again:) His teacher said he did a great job taking his pills at snack time and played well with the other kids:) YEA!!! He made me VERY PROUD today as I watched him:) Go Lil' Chris!!!

Pray for a healthy year!!
M

All Excited about 1st day of Preschool!!!

At "Open House" last night...
First pets...3 goldfish:) My kinda pets;-) LOL!!!!...

Ayla likes them too:)...

I can't believe my lil' boy is all grown up...well, not quite, but too close for me;) LOL

Today he starts his first day of preschool at the age of 4! He has been so excited to start and the day has finally arrived!! I'm surprised he got any sleep last night...I sure didn't!! LOL!!! We went to his preschool last night for "Open House" to meet his teachers and the other kids and their parents. He was able to point out his name on the door, the wall in the hallway where is backpack goes, and all over the walls in his classroom for different things:) I was soooo proud of him!!!

After we checked out his room, we went to the playground. My husband and I thoroughly checked everything for bacteria and such, and we found some nasty standing water in the 2 sandboxes. Freaked me out, b/c it was screaming BACTERIA, BACTERIA, BACTERIA!!! My biggest fear!! I told the teacher not to let him go near those, so hopefully he will stay away from them. There was one truck that was kinda gross too, so I asked if they could throw it away and I would donate one to replace it:) LOL!! A CF mom can't be too safe, right?!?!

Lil' Chris also donated a HUGE bottle of hand sanitizer;) LOL!! I asked the teacher if all the kids could sanitize every time they enter or leave the classroom, since this seemed to keep down the colds and such in Daniel's(fellow local CFer) preschool room last year. She said there are laws about kids sanitizing and she would look into it. Another mom was standing there when I asked, and she seemed to be against it....DARN!!!!! She was saying that the alcohol seeps into their skin and they like become alcoholics or something...blah, blah, blah.... Oh well, I tried;-)

I just wish I could be there everyday to make sure he is sanitizing after playing with the toys, and to make sure he doesn't go in the sandboxes where Pseudomonas could be lurking, and that he stays away from any sick kids. I won't be able to forgive myself if he catches Pseudomonas, since we didn't HAVE to send him this year. I'm such a worrywart!! LOL!! I've been up since 3:30am worrying about those sandboxes and that one other lil' boy who was coughing at the open house last night. I just have to give all my worries to God and let Him handle it to His Will.

Well, I gotta go wake up Lil' Chris, b/c he has to get dressed, brush his teeth, comb his hair, eat breakfast and do his Vest at the same time hopefully, take all his pills, feed his new fish, get his pills and backpack, and walk over to his school for his very first day at Preschool!! Woo Hoo!!!! I love that it's so close and in walking distance:)

Pray he has a safe and healthy first day and school year!!! I'll post 1st day pics soon, I promise!!

M

PS. His cough is getting much better and he usually only coughs during his Vest now, so it should be gone soon...well, now that he is starting school, IDk, we'll see. He has a CF clinic appt this Wed and unfortunately will be missing his 2nd day of preschool;(

Another Successful CF Fundraiser Tonight!!

We had another GREAT fundraiser tonight for Cystic Fibrosis!!! Thank You CiCi's Pizza for always letting us do fundraisers there!! :)

BIG Thank You to Kohl's for yet ANOTHER $500 grant!! I actually had 6 Kohl's associates help out tonight!!! Thank You....

Jill
Rebecca
Barb

Kathleen

Kim

Thank You Barb and Jill for doing the CREATIVE face painting:)

Thank You to our Awesome neighbor Jeff for coming out and supporting Lil' Chris and Cystic Fibrosis for the 2nd time in a row!! :) Thanks Jeff for explaining to me where you got the name Federal Photo from for your AWESOME professional photography business:) If anyone is looking for a GREAT photographer, click here. You won't regret it!!! :)

Our total was around $750!!! WooHoo!!! Thank You Everyone who came out and donated for a CURE for CF!!

There were 3 different customers tonight that had all been at one of my previous CiCi's CF fundraisers, which was really cool!! One of them was actually the raffle prize winner of the 1 hour free massage at Tips, Toes, & Beyond!! :)

Congrats to Cassy Brown who was the winner of the raffle prize tonight:) Thanks Cassy!!!

My next, and possibly last, fundraiser at CiCi's for this year will be on Wed 8/31 from 5-8pm. The raffle will be a 1 hour massage at Tips, Toes, & Beyond and a Buy One Get One Free Indians ticket. Hope to see you there!!

M

PS. You can click on any of the underlined words to follow a link to that site:) I highly suggest checking out the Kohl's one;-) LOL

1st Disney Vaca Pics/Video!!

In May we took the kiddos to Disney World!!! YEA!! It was sooooo much fun!!! They had a BLAST!! I'm so glad I achieved my goal of taking Lil' Chris to Disney before his health may decline(hopefully never;) Of course, I did tear up a couple of times when I was watching his face light up with excitement! It's hard not to when you think of what could have been these last 4 years and what may be in the next...who knows how many years.

This was our first "real" family vacation!! I can't wait to do it all over again!! Hopefully we'll get a chance to do it once every year;-)

Thanks to a fellow CF mom, we got a letter from our CF clinic so that Lil' Chris wouldn't have to stand in long, hot lines which may cause him to become dehydrated. It truly was a blessing, b/c we would not have been able to go on half the rides we did if it wasn't for the pass we got. It allowed us to stand in the handicap line instead of waiting in the long lines, and there was never anybody in the handicap line, so we usually got right on the ride. It was soooo nice!! Although I would MUCH rather Lil' Chris didn't have CF and have to wait in the long lines with us all being healthy! ;(

Ayla did a GREAT job! She is potty trained, but we weren't sure how she was going to do at Disney where you might not be able to find a potty right away. She wore a pull-up in the long car ride there and back, but at the parks she DIDN'T!!! WooHoo for no accidents!!! Way to go Baby Girl!!

Special Thank You to my sis and her fam for letting us stay with them on the way up and back from Disney. It cut the long ride in half which was VERY nice!! Plus we got to visit with them for a couple of days, which was AWESOME!!!

I hope you enjoy this video...beware...it is like 19 minutes long;) There was just too much good stuff to cut out ;-) Although I did cut out a lot b/c it WAS over 30 min long;-) LOL! What can I say...I like capturing precious moments:)

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Coming soon....more Disney pics that the professionals took(way better than mine;-) lol

M

PS. Don't forget...CF Fundraiser at Wooster's CiCi's Pizza tomorrow Tues 8/16 from 5-8p!!