A Cure 4 Lil' Chris

CF Update / Ice Skating Video / Ayla potty training update

2012-01-18T19:14:00.002-05:00

A quick update: Lil' Chris' cough is all better. YEA!! NO ANTIBIOTICS!! WOOHOO!!! Good thing too, b/c I was fighting back and forth with our insurance for a few weeks! He even had to go a week or so without his Prevacid and Aquadek. I def noticed a difference in his stools when he wasn't on the Prevacid! They were def oily. I didn't think the Prevacid did that much, but I guess it does.

Ayla on the other hand started with a stuffy nose and a lil' cough last week. I think it might just be either allergies(mine have been bothering me in the AM too), or she's getting her molars or something. So far Lil' Chris has not caught it and neither has my husband or I...which leads me to believe it's not a cold. She is getting better now though and it's almost all gone. On a good note...she is doing EXCELLENT with her potty training at night time!! I lost count as to how many days in a row it has been now that she has woken up dry!! YEA!!! :)

I've been working on our Christmas video. I finally uploaded most of them, but it is like 38 minutes long. YIKES!! So I'll try to cut it down for you all:) Soooo probably by next Christmas I'll have it done;-) LOL

As part of an AiA event for Kohl's, we have had the opportunity to go ice skating these last few months and the kids LOVE it, and so do I ;)!!! I may have to get some lessons for them:) Today, Ayla finally skated ALL BY HERSELF!!! (with the help of the red walker, that is;) LOL Lil' Chris was racing and going super fast...I couldn't believe it!! They both make me soooo proud ice skating so well at 2 and 4 years old!! It was a little scary when we went today, because Jack, a fellow CF buddy, was there too. So I was extra careful to keep the boys far apart. CFers can share bacterias, so they can't be around each other. Below are some pics and video's of the last couple of times we went...

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We have some pretty big news for the kids in the next couple of days!! YEA!!! I'll try to post their reaction if I can catch it on camera:)

Thanks for always checking in on us:)
M

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

2011-12-25T06:30:00.000-05:00

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

2011-12-22T12:13:00.000-05:00

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 :)

2011-12-05T19:22:00.001-05:00

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

2011-11-16T23:11:00.000-05:00

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

2011-11-01T22:40:00.001-04:00

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!!!

2011-10-28T14:08:00.000-04:00

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

2011-10-26T01:25:00.001-04:00

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!!!

2011-10-21T14:47:00.000-04:00

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

2011-10-14T13:39:00.000-04:00

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!!

2011-10-11T09:27:00.000-04:00

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

2011-10-07T15:01:00.000-04:00

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!!

2011-10-06T05:05:00.004-04:00

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!!!

2011-10-02T15:11:00.000-04:00

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

2011-09-23T15:47:00.000-04:00

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!! :)

CF Update

2011-09-19T19:26:00.000-04:00

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

2011-09-15T23:21:00.000-04:00

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!!

2011-09-06T15:39:00.007-04:00

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

2011-09-03T13:32:00.000-04:00

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

2011-08-22T14:12:00.000-04:00

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!!!

2011-08-22T07:20:00.000-04:00

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!!

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!!

2011-08-16T22:57:00.000-04:00

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!!

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!!

2011-08-15T12:40:00.000-04:00

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

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

Yikes, Preschool time already!! / CF Update

2011-08-14T12:45:00.000-04:00

Decisions, decisions....:)

I guess we have a winner!!

Ayla had to get one too:) Hopefully she still likes Dora next year;-) LOL

It's official...Lil' Chris is going to preschool!!! We went to his preschool orientation the other night! I can't believe my baby is even old enough for preschool already!! Where has the time gone?!?

It was a very hard decision. I don't care about the money(even though we don't have it;), or that he is my baby, as much as him getting sick. I'm just worried that this may be the start of the decline in his health. I told my husband I just want one more healthy year before he HAS to go to Kindergarten. I originally wanted him to go to preschool, b/c he wasn't catching on with me teaching him his letters and numbers, but lately he has really taken an interest in it and is really starting to catch on! He can even write his name now!! I really think I can teach him and get him prepared for Kindergarten now, whereas before I didn't think that. My husband still thinks we should still send him for the experience. I'm just so worried with all the germs. He went to VBS for 2 days and then church that Sunday and got sick. I can't imagine 3 days a week EVERY week, esp in the cold and flu season!! I'm not looking forward to him getting sick all the time and then have to start on nebulizers everyday like most CFers;( We still haven't paid or anything and can still not send him, but he is all excited about going and has his backpack all packed and ready. How can I say no now?! My gut says keep him home one more year, but I guess I'm going to have to let him go and just pray that he doesn't catch too many colds or any bad germs that could really affect him for the rest of his life. It is a church preschool, so there are a total of 15 kids they said. It is Mon, Wed, & Fri from 9-12. At least it's not all day, I guess. lol. Poor thing is going to have to miss his 2nd day of school already b/c he has a CF clinic appt on 8/24. I may try to get the time changed if I can.

Big Thank You to my sis-in-law for letting me vent to her. I thought I might as well vent on here too;) LOL :)

Another BIG thanks to my fellow local CF moms, Alma and Mary, for giving me some good advice on educating the teachers about CF, and for putting my mind at ease a little bit:) THANKS GIRLS!!!

Look...I can FINALLY fit all of Ayla's hair into a ponytail:) YEA!!! I was sooooo excited!! She's 2 1/2, I thought it would never happen;-) LOL

As requested by Victoria's mom, here is the nose suction thing I was talking about in a previous post. I've seen them at Kmart and Babies R Us usually for about $19.99.

Lil' Chris' cough turned wet after my last post. He is still coughing, but not as much as he was. I'm hoping that it will go away on it's own without any antibiotics like the last 2 coughs. Everyone else is all better, PTL:) Thanks for all the prayers!!

This Tues(8/16) I have another CF Fundraiser at CiCi's Pizza in Wooster from 5-8pm!! Hope to see you there!!

I've got lots more to post about, but house chores are calling me;(

Pray Lil' Chris stays healthy throughout the school year!

Thanks,
M

Cold / Cough Update

2011-08-04T18:52:00.001-04:00

Well, I guess it was inevitable...Ayla is sick too with a runny nose and cough;-( My nose was runny a little bit today too, but not too bad yet...it will probably hit me tonight or tomorrow;( Boooooo. Oh well. I hope my hubby doesn't get it or Oma and Opa since Nathan and the boys will be staying at their place next week.

Lil' Chris was so stuffed up today, that he asked to get his nose suctioned...shocked, right?? I know!! Me too!!!!! So I did a little, then he did a little with the lil' ball thingy, then I brought out the big guns(the battery operated thing that sucks out the snot, sorry I know it's gross;) LOL! To my surprise....he did GREAT!!! He was always afraid of that thing!! He just hit the button to play the music and then suctioned his nose, and then I got the rest!! The part he really liked was seeing the snot drip down in the little holder....I know TMI;) LOL Sorry!! I'll stop now, but in the CF world, it's common to talk about all these gross things:) To know that he likes the suction thing is a BIG step for him!! GO LIL' CHRIS!!!! BTW, Ayla tried it herself for a second, but would not let me go near her with it;-) LOL

I guess that's it for now, oh yeah...his cough still sounds mostly dry, but will probably turn into a wet cough soon unfortunately;(

Thank you everyone for all your prayers for Lil' Chris and for Phoenix, his fellow CF buddy. I am happy to report that Phenny is doing much better and is home:) YEA!!! See prayer does work!!!

I'll keep you posted,
M

CF Updates on Lil' Chris & Phoenix

2011-08-03T22:43:00.000-04:00

I thought I would give an update on Lil' Chris' cold. His nose has been stuffy all day and he has been coughing quite a bit too. Although it is a dry cough as of right now, it still worries me, b/c it usually turns into a wet one. Yesterday his nose seemed to run more, but today I think it thickened up a bit like it usually does. I think it's b/c of the CF, you know...all that lovely thick sticky mucus;) Gotta love it!

He did a decent job wearing his mask today. I would say he wore it about 50% of the day. I tried getting Ayla to wear one too, and to my surprise she loved wearing it!! I guess it made her feel like a big girl;) I just hope she doesn't get sick too from when he wouldn't wear it, by the end of the night, I noticed her sneezing a few times and sniffling...uh oh:0

Lil' Chris ate pretty good today, so I was happy about that!! It was probably b/c I kept telling him that if he was done eating then he would have to put his mask back on.....so he kept eating;-) LOL!! I should do that more often;) LOL

As for an update on Phoenix...his mom wrote(hopefully she doesn't mind me copying this:) "Positive thoughts, well wishes, and prayers are working! Things are looking better for Phenny Man! Think we may of found the right combination of medicines! Go Phenny Go! (And yes I do mean that literally)" All I have to say is...it's about time the dr's got it right, poor kid!! Please keep praying for both our boys!!! We know prayer works wonders!!

I'll keep you posted,

PS. Thank you so much to those who sent Phoenix a card from my last post!! I know it put a smile on his face whether he knew you or not:)

Cold & Cough / Send Phoenix a Card Please!!

2011-08-03T09:59:00.005-04:00

Lil' Chris woke up yesterday and first thing he said to me was, "Alya's sick." I said, "How do you know? She's still in her crib!" Then the rest of the day HIS nose was running and he was sneezing a lot. Today he woke up and first thing he said was, "I have a cold." Poor kid;( He was coughing on and off throughout the night and he is so stuffed up. No one else is sick yet, so I'm going to try to keep it that way(like that's possible LOL;) Luckily I asked for boxes of masks last time we went to the CF clinic. I'm trying to get Lil' Chris to wear a child mask today so he doesn't get Ayla or myself sick. Poor kid, I know it's a pain when I get sick and have to wear one for a couple of days;(

Lil' Chris asked to take his mask off to got to the bathroom, and while in there he coughed and Ayla yells, "COVER YOUR MOUTH, CA'S!!" LOL!! I wonder where she got that from?? ;-) LOL

Please pray that he gets well soon and that it doesn't turn into anything worse, and that he won't need any antibiotics or anything. Also pray that no one else catches it, b/c their cousins Nathan, Lincoln, & Tyler are coming this Sunday for a whole week. YEA!! We don't want to get them sick tho, esp Nathan since he has Leukemia and his counts are low, so he is even more susceptible to germs;( We were all planning on going to Cedar Point next Tues 8/9 with all the kids and for our 8 year anniversary:) (WOW!! 8 years already!! Seems like yesterday we were married;-) So pray we are all healthy enough to go have some fun together!! I'm hoping he is all better by his next CF clinic appt on the 24th.

I have one last prayer request...one of Lil' Chris' CF buddies, Phoenix, is sick and in the hospital and could really use some prayer. He is in a lot of pain and the doctors can't seem to relieve it(that's all I can say for now without permission from his Mommy;). GET WELL SOON, PHENNYMAN!!! WE LOVE YOU!! He is loving the cards that are being sent to him. "Family and friends are invited to create and send personalized cards to patients who are currently hospitalized. The card will be printed and hand-delivered by hospital volunteers." All you need to do is go to http://www.childrensmercy.org/patientcards/chooseCard.aspx then choose your card and click "next" at the bottom. Type in Phoenix Entrikin age 3 and they can send him a card from you! His wall of love is growing and I don't know about you, but I'll do anything to put a smile on his lil' face right now:) Please do it, it only takes 2 seconds!! Thanks:)

I'll keep you posted,

PS. So far, he hasn't been keeping the mask on;( I have a feeling Ayla & I will wake up tomorrow with a runny nose;(

Day 2 of VBS / Recap of Day 1

2011-07-29T19:35:00.002-04:00

After VBS yesterday at John's game:)

His pill box that he kept in his pocket yesterday and today:)

"Go Wild For God!!" Lil' Chris went over and put his head in all by himself:)

Day 2 of VBS...Jonathan, Lil' Chris, and Logan(I think;)

Today was Day 2 of VBS(Vacation Bible School) for Lil' Chris and the last day. He was so excited all day to go!! He had soooo much fun yesterday!! He did a GREAT job with his craft! Bonus was that it was a kazoo that they made into a Panda, and kazoo's are great for his lungs b/c he has to blow!!

So, I just dropped him off and guess what??? I left RIGHT away!!!!.... After taking a couple of pics of course;-) LOL! I was so proud of myself (so was my husband when I text him;)

After VBS yesterday, we asked him if he had fun and he said "YEAH!!" Then he said, "I missed Ayla;(" Then Ayla said, "I missed Ca's too;(" That's what she calls him now. It used to be Ca, but now she adds the "s" on it;) Too cute these kids!! He then said he missed all of us and wished we could've been there too. Love this kid!!

Then we asked him what his friends names were and he couldn't remember. I said is one of them Jonathan? He said "yeah" and then Ayla said "and Andrea??" LOL! She thought we were talking about John our neighbor, I guess:) Then we asked them if they wanted to go watch John play softball, and Lil' Chris goes in a deep loud voice, "OH YEAHHHHHH!!" over and over again;) I guess he really wanted to go!! :) LOL!!

Ayla has done really well not having her big brother around to play with!! I know it's only a couple of hours, but still. After we dropped him off yesterday, she said "Where's Ca's?" but then when we got home, she played so well all by herself...almost better than I've ever seen her play with her toys!! Amazing, isn't it? It's like she can finally enjoy all her toys without having to worry if Chris was going to try to take it from her;-) LOL!

I have to admit...it's kinda nice not having them fight over who's going to sit on my lap! With the 2 of them here, I can barely sit in the living room without them trying to race each other to sit on my lap first! Of course, then the other one starts crying...usually Ayla;) Without Lil' Chris here, I can sit down and Ayla just keeps on playing with all her toys! Kinda nice;)

Can't wait to hear his new stories tonight!!

PS. When he starts preschool, I just might have more time to blog again! YEA!! ;) lol

1st Time at VBS = 1st Time Away from Me;(

2011-07-28T19:51:00.000-04:00

First time ever at VBS!! He is the lil' one in the red shirt in the middle trying to do the dances like everyone else;-)

Taking his pills before snack:)

VBS Friends :)

Well...we just dropped off Lil' Chris with complete strangers for the first time ever!! Ok, not complete strangers...our Awesome neighbor is one of his leaders, so that's cool:) THANK YOU CARRIE!!! He is doing VBS at the church right up the road tonight and tomorrow night. I have to admit, I was very nervous leaving him for the first time. If it was Ayla, I probably would've said "Here ya go, have fun!" and left, but with Lil' Chris...I don't know...things are just different for many reasons...

1. He has a fatal disease

2. He has to take pills every time he eats

3. He is allergic to soy protein

4. He has to be germ cautious (stay away from those that may be sick, which he doesn't understand yet)

5. I tried teaching him to cover his mouth with his arm instead of his hand when he coughs, so that he doesn't spread germs to others(not that they could catch CF, but he may cough more than others and some parents may get freaked out), and so that he isn't putting his dirty hands on his mouth either;)

6. It means he is growing up:'(

We stayed long enough to watch him take his pills at snack time all by himself with the watchful eye of his leader. HE DID A GREAT JOB!!! He knew where they were in his pocket, he knew how many to take, and he took them BEFORE he ate!!! I was SOOOO PROUD of him, that it brought a tear to my eye watching him from afar. He is getting so big!!

Sending him to VBS these couple of days is kinda practice for when I have to let him go this Fall for preschool. I thought this was hard...sheesh!!! LOL :) I think he'll be fine, it's me who will be a mess! LOL! He made friends real quick tonight! At snack time, the other kids were calling his name to go sit with them! So cute:)

After we left him there, it was like we were lost! We were like..."Ummmm, what should we do now?" LOL!!

I can't wait to hear all the stories when he gets home!!! :)
M
PS. Thank You Carrie for looking after him:)

8th Successful CF Fundraiser / Save the Date for my last 2 CF fundraisers!!

2011-07-19T12:28:00.000-04:00

We had another GREAT CF fundraiser at CiCi's Pizza last night!!! The night seemed to fly by for me, b/c it was so much fun hanging out with my Kohl's girls and all my wonderful neighbors that came out to support Lil' Chris and CF!! THANK YOU THANK YOU THANK YOU!!! Our total raised was about $720!!!

Big THANKS to my AWESOME Kohl's associates who volunteered their time to help us raise $500 from Kohl's again, which brings our total so far to $4,500 just from Kohl's this year!!! THANK YOU KOHL'S!!...

Sharon(this was her 4th one in a row, I think!! You ROCK Sharon!!)

Rebecca(my recruiter:) Thanks Rebecca!;)

Esther(her 2nd one in a row, thanks Speedy;)

Patty(I think this was her 2nd one in a row too! Thanks old babysitter;-)

Special thanks to all my FANTASTIC neighbors for their support...

Carrie, John, & Gideon(hope your finger feels better Gideon;)

John's parents(sorry, I can't remember their names;)

Rachel, Seth, Brayden, & Jordan(your kids are too cute:)

John S. (thanks for the tips on hopefully getting the piece of land next to us;)

Jeff(thanks for sticking around afterwards and eating with me, it was nice chatting with you;)

You guys all ROCK!! I CAN'T THANK YOU ALL ENOUGH!!!

Congrats to Amanda for winning the raffle prizes!!! Thanks for your donation!!!

SAVE THE DATE: My next/LAST 2 CiCi's Pizza CF fundraisers for this year will be...

Tuesday 8/16 from 5-8pm. Raffle will be $25 gift card to El Campesino, 2 movie tickets, & Buy One Get One Indians ticket.

Wednesday 8/31 from 5-8pm. Raffle will be 1 hour massage at Tips, Toes, & Beyond, and Buy One Get One Indians ticket.

Hope to see you all there!!

PS. Thanks Oma for babysitting:)

Vest for $50 / 8th CF Fundraiser this Monday 5-8p

2011-07-17T08:42:00.000-04:00

Join us this Monday, 7/18, between 5-8pm at CiCi's Pizza in Wooster for our 8th fundraiser for Cystic Fibrosis this year!!! There will be face painting and a raffle!!

See you there:)

For an update on Lil' Chris...he is still doing VERY well!! PTL!! He also has been doing a GREAT JOB putting his Vest on all by himself and turning on the machine too!! I haven't put his Vest on him since I last posted about it! YEA!! This probably doesn't seem like such a big deal to most of you, but trust me...IT IS!!!! It used to be a hassle every time! He was really bad about it, but it was still a pain. I would have to count to 3 and he would run and lay on the couch and pretend to sleep, I would sometimes have to drag him over to it, or even end up spanking him b/c he wouldn't listen;-( I HATED having to spank him to do his Vest, but I'm a firm believer that if they don't listen by the time I count to 3, then they get a spanking(don't worry, not a hard one;) I can't treat him differently b/c of his CF, I won't allow myself to.

So now I tell him to go pick out a Wii game and put his Vest on. I put the game on while he puts his Vest on...and PRESTO...NO FIGHTING!! I LOVE IT!! It makes life sooooo much easier!!! I tried to sneak it so he doesn't have to play Wii every time too, and the first time he said about 10 minutes AFTER the Vest was done..."Hey, I didn't play Wii!!" I told him "that's ok, you don't have to play Wii every time." Surprisingly he was ok with that;-) I'm so tricky;-0 LOL Now he plays Wii about half of the time I would say and it doesn't seem to bother him...YEA!!!

One time I offered to help him put his Vest on b/c he was getting all tangled up in the hoses and he said "I'LL DO IT!!" I said "OK", I think he likes being a responsible "big" boy who can put his Vest on all by himself now;) I don't even have to be in the room to make sure he does it too! I've been upstairs a few times and have yelled down for him to put his Vest on and ....next thing I know...I hear the machine running!! I AM SOOOOOO PROUD OF HIM!!! He's such a good boy!

Get this...the other day I bought the same exact Vest machine with hoses and all for only $50!!!!!! Yes, $50!!! I couldn't believe it!! They cost about $18,000! It only has 109 hours of use on it too, so it's practically brand new!! Lil' Chris is up to over 900 hours! It came with an adult XL Vest, so my guess is that he or she might have passed away and the family sold it or gave it to this yard sale type place. We are going to clean it REALLY good b/c of the risk of cross-contamination, and then leave it at my in-laws house for when he is over there sometimes. Who knows, in the future if he has a bad cough, he will need to do his Vest 3-4 times a day. $50 was well worth it!! I know of a few people on fb that are giving them away for free, but you would have to pay shipping. The shipping would probably be over $50 since is weighs over 30 lbs.

They originally had it priced at $500 and it sat there for a really long time, we first noticed it about 6 months ago. Then my MIL asked about it the other day and they said they would take $100 for it. She told me, so I went to look at it and I tried it all out to make sure it worked ok...all the while making sure Lil' Chris did not touch it. I couldn't believe it had everything and worked great and it even had extra stuff that I don't even know what it is, maybe nebulizer stuff?? IDK. It's sitting on top of it in the pic above. If anybody knows what it is, please let me know;) It also came with some thin clear hoses too that I'm guessing attaches to that silver thing.

So anyway, since it was like a yard sale type place I figured why not try to get it cheaper;) LOL! I was going to try $75, but then I figured why not try $50? To my surprise he took one look at my son, and said, "Since it's for the well being of your son, sure" and then he took the $50!! WOW!! I am VERY thankful he did, but I would have paid the $100 b/c it was so well worth it;-) Hehe! Don't tell him I said that;-) LOL! ;)

Lil' Chris & Ayla's 1st Wedding!!

2011-07-12T11:30:00.000-04:00

Photo and video editing at www.OneTrueMedia.com

On 7/9/11, we went to our neighbors wedding and it was Lil' Chris and Ayla's first wedding that they have ever been too!! Kind of a big deal;) They were sooooo excited and couldn't wait to "dance the night away" :) They did just that...check out the video above...the last 3 minutes is of them dancing, break dancing, head banging, doing the worm, you name it, they did it!!! ;-) LOL

The ceremony was beautiful and Andrea was just glowing!! Andrea used to babysit for us, so I was expecting the kids to yell "Andrea!!" when she started walking down the aisle, but they did very good and sat very quiet and just gave lil' waves to John and Andrea;)

I wanted to put together a lil' video for them, but I forgot my real camera, so I had to use my cell phone;( I was so bummed, but the video didn't turn out too bad...just a lil' blurry;)

CONGRATS JOHN AND ANDREA!!!

Lil' Chris' 4 Year Pics / 600th Post!!

2011-07-05T17:29:00.000-04:00

This is my 600th post!!! I thought it was fitting that it is my post of his 4 year pics:) He did such a great job and had a great smile for EVERY pic!! My handsome lil' man;-) Where did my lil' boy go?? ;'(

CF Update / Update on us all:)

2011-07-01T20:53:00.000-04:00

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

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:)

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

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

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!!

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

Great CF Fundraiser Night!!

2011-06-30T21:47:00.005-04:00

Another GREAT CF Fundraiser tonight at CiCi's Pizza!!! Thank You to all who came and to all who donated!! Thank you to my awesome neighbors for coming out and supporting Lil' Chris...

Carrie and Gideon

Rachel, Seth, Brayden, and Jordan

BIG THANKS to my Kohl's girls for helping us raise $500 tonight from Kohl's...

Esther

Kathleen

Sharon

Karen R

Thank you Sharon for always inviting your family to come too:) Thanks Sharon's family for always willing to come and support CF!!! :)

Tonight's total was about $700!!! WooHoo!!!

CF Fundraiser Thurs 6/30 5-8p at CiCi's

2011-06-29T16:31:00.002-04:00

Join us Thurs 6/30 between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 tickets to an Indians game of your choice in August or September!!!

We raised $230 last time with this raffle, so hopefully we will have another GREAT night!!!

PLEASE SPREAD THE WORD!!!

Special thanks my awesome Kohl's team for signing up to help out...

Esther

Kathleen

Sharon

Karen R

Thank You Girls!!! Your support means sooooo much!!!!

Culture Result / Missing Connerman / CF Fundraiser this Thurs

2011-06-24T17:56:00.004-04:00

I finally got Lil' Chris' throat culture result from our last visit on 5/18...for some reason MyChart was not working properly, and it just said "See below" but there was nothing below. When I sent a message about it, the nurse said that they have been having problems with the site. Has anyone else noticed this?? I hope they fix it soon, b/c we all sit on pins and needles for that report to come back!

Anyway, he cultured Staphylococcus Areus Sensitive to Oxycillin(MSSA). This is what he seems to always culture now;( I was hoping for a "normal" result this time since he hasn't had one in a very long time. Oh well, at least it's not something to worry about they say! Praise the Lord for that!!

I wanted to share a link with you to Conner's mom's blog. If you remember, I wrote about Conner passing away 1 year ago today. He was only 7 years old and had CF. In his short time on earth, he touched sooooo many lives in the CF world!! We even did a red craft at our walk last year b/c that was his favorite color. So many around the world are wearing red today in honor of him, and are changing their profile pics on Facebook to something red. He will truly be missed by many. Love Love Love you Connerman!!! http://notsobrightandshiny.blogspot.com/

Don't forget....

this Thurs June 30th from 5p-8p I will be at CiCi's Pizza in Wooster for "A Cure 4 Lil' Chris" and ALL who suffer from Cystic Fibrosis!! Come on out and support Lil' Chris and Cystic Fibrosis...don't forget to bring the whole family, and please spread the word!!!! AWARENESS IS KEY TO A CURE, AND WE MUST FIND A CURE SOON!!!!

Fantastic Father's Day!!

2011-06-19T22:46:00.000-04:00

For Father's Day, we went to the Akron Aero's Baseball game! YEA!! It was so much fun and there was tons of stuff for the kids to do!! It was the first time for all of us to go to this field. It was Lil' Chris and Ayla's first time ever to a baseball game!! YEA!! It was kinda special to us, since this is the field that we always see from our CF clinic room when he goes every 3 months!

Lil' Chris....just like his Daddy;o LOL!!

Having a catch with Daddy on the field before the game started...

I just had to take a pic of them in front of this sign;-) LOL! That's the hospital that he goes to every 3 months and Kohl's is where I work:-) LOL

Ayla did not want her pic taken, can you tell??

Got his baseball autographed:)

HAPPY FATHER'S DAY

TO ALL THE DAD'S OUT THERE OR DAD'S TO BE;-)

SPECIAL SHOUT OUT TO ALL THE FANTASTIC CF DAD'S:-)

Why I Fundraise / CF Update / CiCi's CF Fundraiser Results

2011-06-17T09:00:00.002-04:00

My last CF fundraiser at CiCi's Pizza went VERY WELL!!! It was a FANTASTIC night and a lot of fun!! We raffled off 2 tickets to an Indians game of your choice, and it was a BIG hit!! We normally raise around $100-$150 in the raffle, but this time we raised $230!!! BIG THANKS to my awesome Kohl's associates who helped us raise another $500!!!......Rebecca, Jill, Sharon, and Patty!!! Thank you girls, you all ROCK!!!

That puts us at $3,000 raised from Kohl's so far this year!! Thank you KOHL'S!!!! (for some reason they are not showing on my Great Strides page, but they are there;) So all together with the 10% from the receipts, the total for that night will probably be around...$800!!! WOOHOO!!!! That's awesome!!!

Thank you so much to all who donated or bought tickets!!! There were some very generous people who threw $10 or $20 bills in the donation jar and didn't even want any raffle tickets! I'm always amazed by such generous people! BIG thank you to the winner of the raffle as well!! I won't mention her name since I didn't ask her if I could, but I was glad she won, b/c she bought the most tickets...$20 worth!! CONGRATS on winning if your reading this;-)

What made the night even better was I met a couple of people who knew somebody with Cystic Fibrosis! One told me of a friend or relative(I can't remember now, I want to say she was her niece;) that was in her 20's with CF and had 2 kids and was doing well. She had a little bit of a hard time with the pregnancies, but that's to be expected. Another told me of her friend, who I believe was in her 20's as well, who was also doing well. Stories like these give me hope for Lil' Chris' future:) Thank you ladies for sharing your stories with me and for your donations!!

As for an update on Lil' Chris....he is doing well. He still has that wet cough, but it's not as often as it was. I'm praying it goes away before needing an antibiotic. I'm always cautious to put him on an antibiotic if he doesn't need it b/c the more antibiotics he takes or is on, the sooner his body will start to reject them. There is only so many antibiotics or drugs, and once he becomes resistant to them all.....well, that's when he will get more and more lung infections and irreversible lung damage. The next step would be a double lung transplant. Then starts the waiting game and all the questions...would he get the new lungs in time?? Would his body reject the new lungs?? Even with new lungs, he will always have CF.

Many CF families can relate to this thinking. We all know it's a POSSIBILITY for their future. All we can do is have faith, hope, and trust in God, and pray that a CURE if found SOON!!!!! I pray that God gives Chris and I the KNOWLEDGE of when to call and get him put on an antibiotic...or any big decisions that may be in his future.

When Lil' Chris was first born in 2007, they told us that the life expectancy for CFers was 36....today it is 37 1/4!!!! We are getting closer and closer to a CURE or a better control of this horrible genetic lung disease EVERYDAY!! Now you probably see why I do all the fundraising I do, why I ask/beg for donations, why I organize and put together a Great Strides walk every year...all for "A Cure 4 Lil' Chris" and ALL CFers!!! I'M GONNA DO ALL THAT I CAN, TO SEE A CURE IN LIL' CHRIS' LIFETIME...I HAVE TO!!!

My next CF fundraiser will be on Thurs June 30th from 5p-8p at CiCi's Pizza in Wooster. The raffle will be the same as last time, 2 Indians tickets to a game of your choice. Hope to see you there!!

Thanks again to everyone who has donated this year and in the past! We WILL see a CURE in Lil' Chris' lifetime!! I just know it!!
M
PS. If you haven't donated yet and would like to, click here:) Even though the walk is over, we'll always still take donations:) Thanks!

CF Fundraiser Tonight at CiCi's Pizza 5-8pm

2011-06-13T15:12:00.002-04:00

Join us tonight between 5-8pm at Wooster CiCi's Pizza to support Cystic Fibrosis and Lil' Chris! Raffle is for 2 free tickets to an Indians game of your choice!!!

Special "thank you" to my fellow Kohl's associates... Jill, Rebecca, Sharon, and Patty for volunteering their time tonight to help out so that Cystic Fibrosis will get another $500 grant from Kohl's!!!

YEA!! THANK YOU GIRLS AND THANK YOU KOHL'S:)

This CF fundraiser will put us at $3,000 raised from Kohl's alone this year!!! WOW!! 4 more events and we will be at our goal of $5,000!! WooHoo!!! I've got some pretty awesome Kohl's associates, don't I :-)

900 Hours on Vest / Wet Cough / Clinical Study on DF508

2011-06-11T10:33:00.000-04:00

When we were at Disney, Lil' Chris reached the 900 hour mark on his Vest!! Way to Go Lil' Buddy!!! Also....he hit a milestone thanks to his cousin R! He can now unbuckle his Vest all by himself!!! YEA!!! Now he doesn't have to undo the velcro anymore and make it so it doesn't stick. Anyone with this Vest would know what I mean;-) lol

When we came back from our Disney trip, of course we all got sick ;( It was actually the day after Memorial Day. Big Chris, Ayla, and myself all caught a cold and had runny noses. Ayla had a cough too. Lil' Chris woke up that morning at 6am throwing up until about 10:30am off and on. We don't think he had any soy protein, but it seemed like it. Hopefully he's not allergic to something else too.

Anyway, he had a slight fever that day and just hung out on the couch for a couple of days(he's sleeping on the couch in the pic above...which NEVER usually happens), but no more throwing up. He didn't eat much either, but he would drink so that was good. After those couple of days he was fine!! He still has not caught our colds which is GREAT, but of course he woke up on his birthday with a weird sounding cough. Then he had a bad wet cough the whole car trip to Cedar Point. We almost turned around. Once we got to Cedar Point and he started going on the rides, he didn't cough much anymore:) Since then, he has been coughing off and on... still a wet cough. The last 2 mornings he has woken up early coughing a lot. Once he got up and moved around, he stopped coughing so much...just off and on again. I left a message on MyChart with the CF clinic letting them know that I would keep an eye on him this weekend and if it gets worse I'll call them on Monday. Meantime, we'll do more Vest treatments and Albuterol if he needs it. Please pray it gets better so he doesn't need an antibiotic. I'll keep you updated.

On a good note, there has been some more promising results in some of the clinical studies that could help Lil' Chris since he is a double Delta F508, the most common CF gene!! This could be HUGE for CFers!! Please pray this is the CURE or more CONTROL of CF we have been waiting for!! Click here for the whole article or read below....

Phase 2 Study of Two Potential CF Therapies — VX-770 and VX-809 — Shows Promising Results in Patients with Most Common Mutation

June 9, 2011

Vertex Pharmaceuticals Incorporated and the Cystic Fibrosis Foundation today announced promising results from an ongoing Phase 2 study evaluating combinations of VX-770 and VX-809, potential medicines designed to treat the defective protein that causes cystic fibrosis.

The study enrolled 62 people with two copies of the most common CF mutation, known as Delta F508. The trial lasted three weeks. Participants took VX-809 for two weeks, and VX-809 and VX-770 together for a third week.

Patients who took the drug regimen showed a positive change in sweat chloride levels. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The findings suggest that VX-809 and VX-770 together improve function of the defective CF protein, known as CFTR.

“The results of this study represent a milestone in our efforts to expand the use of small molecules to attack the root cause of cystic fibrosis in those with the most common defect,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “These data, while early, provide important new information that validates our approach and supports continued study of a combination-therapy approach to treating the basic defect of cystic fibrosis.”

The CF Foundation worked with Vertex to discover VX-770 and VX-809, and has provided substantial scientific, financial and clinical support throughout the development process, including an approximately $75 million investment.

These positive results support further testing of VX-770 and VX-809 as a combination therapy. Vertex plans to initiate the second part of this Phase 2 study in the fourth quarter of 2011.

In people with the Delta F508 mutation, the defective protein does not move to its proper place at the cell surface. VX-809 is designed to help the protein reach the cell surface, while VX-770 aims to help the protein function more normally once it is at the cell surface.

The defective protein creates a cascade of symptoms, including a buildup of mucus in the airways and other complications that lead to lung damage and ultimately premature death.

The CF Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF. In the 1950s, children with CF usually died before reaching elementary school. Today, people with CF live into their 30s and beyond.

HAPPY 4th BIRTHDAY, LIL' CHRIS!!!!!

2011-06-06T07:48:00.009-04:00

I've got soooo many things to share on the blog right now, but no time....today is all about my lil' boy:) 4 years ago today I went into labor and gave birth to my first and only son, Lil' Chris! What joy he has brought into our lives!!!

HAPPY 4TH BIRTHDAY

LIL' CHRIS!!!!!

WE LOVE YOU!!!!

LOVE,

MOMMY, DADDY, & AYLA:)

We took Lil' Chris to Disney for his birthday a week ago(I'll share more pics and video's soon, sorry I haven't had time), but today is his actual birthday!! So we are taking him to Cedar Point to celebrate the day:) YEA!! Cedar Point is a HUGE amusement park and tons of fun!!!

When we were at Disney, it was Goofy's birthday too:)...

This next pic made the whole trip worth it! All the money, the long drive, the heat...everything! It's like his expression is saying...

"Wow, I can't believe I'm meeting Mickey Mouse!!!!!!!!!"

Garage Sale / Bake Sale for Cystic Fibrosis Sat 6/4 at 9am

2011-06-03T09:30:00.000-04:00

Tomorrow, Sat 6/4, our development is having it's annual Community Garage Sale and 2nd Annual Bake Sale for Cystic Fibrosis:) YEA!!

It raised a lot of money last year and there are even more neighbors doing it this year!! YEA!! I'm overwhelmed by the love and support we get from all our wonderful neighbors who love and adore Lil' Chris:) Not only do they walk and donate for a cure, but they also put their time and effort into an already stressful day by baking and selling goodies for a CURE for Lil' Chris and ALL who suffer from Cystic Fibrosis!! We can't thank them all enough!!

"THANK YOU WONDERFUL NEIGHBORS!!! YOU GUYS ALL ARE AWESOME AND HAVE SUCH GREAT HEARTS!!"

Can't make it to the garage sale but would like to donate??? No problem, just Click here to help make a difference in the lives of those suffering from CF:)

Thanks everyone,

PS. Please pray it doesn't rain tomorrow and we have a good turnout;) I'll let you know how it goes:)

4 Year Annual CF Clinic Visit

2011-05-18T21:01:00.001-04:00

Lil' Chris had his 3 hour 4 year annual CF clinic visit today and it went GREAT!!!! His weight was 38.6 up from 37.3 and his height was 42 inches up from 40 3/4 and his BMI was 47% down from 50%. They didn't seemed to worried about it only being 47%. They usually want CFers to be above 50%. They said he had a growth spurt!! I'm just glad he can go on the 42 inch rides at Disney now:) LOL

All 8 different nurses/dr's that we saw today said to "keep up the good work and that he is doing GREAT!!!" Gotta LOVE hearing that:) They made no changes to any of his meds since he is doing so well. YEA!! They did take a throat culture test, so now it's just the waiting game;( Why must they torture us so long?!?! Please pray it comes back "normal." I'll let you know when I find out.

A few tips that we took away from todays visit:

1. It's common for CFers to get thirsty when doing the Vest. If you put your hand in front of their mouth, you can feel the air being forced out, so all that air may make them thirsty.

2. You can get a letter from your CF clinic for places like Disney to get in front of the lines or in the Fast Pass line for free so that they don't dehydrate waiting in the long lines in the heat. We got our letter today!! YEA!! I think it's for up to 6 people too:) Thanks Chrisy To Jobe for mentioning that one to me;)

3. New high calorie drink to try, see pic above. He drank 1/4 of one there, but we'll see if he will drink it at home.

4. To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $775!!! WooHoo!! You get $50 just for joining and $25 every 6 months!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!! Thanks:)

5. Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Well, I've got a TON of things to do, so I'll write more when I have time:) Thanks for the 28,000 hits!!

CF Annual Clinic Visit Tomorrow!!

2011-05-17T21:51:00.003-04:00

CF Annual clinic visit tomorrow morning. I'm a little worried about his weight. He seems to be stuck on 38 lbs whenever he jumps on the scale here...seems like it's been a YEAR!!! Ughhhh;( I wish he would just EAT!!! It's so hard to see other kids younger than him eat like a champ, or Ayla scarf down food like she hasn't eaten in days... when Lil' Chris is the one who needs all the extra calories!!!! Frustrating!!! I keep praying his appetite will pick up.

Other than the weight, he is doing so well that I'm not worried about the rest, except of course the dreaded throat culture result;-( I pray it's "normal" or nothing to worry about. I'm soooooo glad he never got a bad cough after that last cold like he usually does!!!

Well, I'll let you know how the visit goes!!
M
PS. I'll try to catch up on my "31 days of CF" on FB soon, I promise! Even if it takes me to December, I'll finish it!!! LOL ;-)

2nd Annual Great Strides Walk Video 5/14/11 :)

2011-05-16T23:24:00.000-04:00

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

This past Saturday was our Great Strides Walk for a Cure for Cystic Fibrosis and it was AWESOME!! The grass was wet, but it didn't rain at all the whole walk:) YEA!! As you can see above, I got a lot of great pics:) I think I already know which ones I'm going to use for the commercial for next year;-) LOL :)

Once again, I just wanted to thank all of our sponsors who truly made the day a success...
Panera Bread
Domino's
McDonald's
Frito Lays
Culligans
Buehler's
Speedway
Pat Catan's
Wooster Police
Clear Picture
The Daily Record

Woo's Brew's

Bowman Beverage

Ida Sue School for the Pavilion

BIG Thank You to my fellow Kohl's Associates for helping out by handing out t-shirts, tickets, food, and for walking:)...

Amy K

Barb

Jill

Missy

Mandi

Roberta

Aaron

Karen

Kathleen

I want to thank my AWESOME neighbors who came out to support us again this year and for their awesome donations too:)...

The Butlers

Carrie and Gideon

John

Rachel, Brayden, & Jordan

Sean & Mike

Thank you Amy K, Oma & Opa, Sean & Michelle, Steph & Greg, Danielle & Steve, Deb, and Kevin & Jess for all your collected donations and support!! It really means a lot!!

Thank you Opa for walking and Oma for babysitting Lil' Chris and Ayla at home because of the risk of cross-contamination.

Thank you to all our raffle donors and especially Stacy A. from Kohl's who put together about 5 baskets of Bath and Body Works products and Amy for donating the product:)

Thank you Pro skate boarder, Doug Brown, for donating an autographed poster. That was awesome and one of the lil' CFers, Jack, won it:)

BIG thank you to Erica and her husband for all the hard work of set up and tear down and making everything go smoothly:) You guys rock!!

Thank you to ALL who came out to support Cystic Fibrosis!! We had about 70-75 people and raised about $7,500 and by the end of Summer we should be at about $15,000!!! This is up from $13,000 last year:) WooHoo!!!!!!

Special thanks to my sister D and my SIL Steph for leading a Great Strides team for "A Cure 4 Lil' Chris" in their states!!! You guys raised a ton of money, you and your donors are SUPER AWESOME!!

Our walks would not have been a success without all of you guys!! THANK YOU, THANK YOU, THANK YOU TO ALL WHO WALKED, DONATED MONEY/RAFFLE PRIZES, SPONSORED, AND ALL WHO DONATED ONLINE OR SENT CHECKS IN!!! WE THANK YOU FROM THE BOTTOM OF OUR HEARTS!!! WE CAN'T THANK YOU ALL ENOUGH!!

For those who didn't get a chance to donate yet, but would like to...click this link http://www.cff.org/Great_Strides/LilChrisChris6765 we will be collecting donations for this years walk until the end of the Summer:)

PS. As for an update on Lil' Chris... he is doing GREAT!! Praise God he did not end up with a bad cough after that last cold he had!! YEA!!!

Join us today for our Walk for a Cure for CF!!!

2011-05-14T07:29:00.003-04:00

About to leave for our 2nd Annual Walk for a Cure for Cystic Fibrosis!!! It's supposed to rain and everything is wet right now but not raining, so hopefully it won't rain again for the next 5 or 6 hours:)

If you would like to donate or walk still, it's not too late:) Click this link ... http://www.cff.org/Great_Strides/LilChrisChris6765

Hope to see you there!!! It's going to be sooooo much fun even if it does rain:)

Good luck to all the other Great Strides walks going on today around the country!! Thank you to my sister D and her family, and my SIL Steph and her family for walking in their states:) We love you guys!!!
M

Walk for "A Cure 4 Lil' Chris" / Thank You Sponsors!

2011-05-07T10:53:00.001-04:00

Exactly one week from today, we will be walking for "A Cure 4 Lil' Chris" at the Hewitt Cowles Pavilion by Ida Sue School at 9am!!! It's not too late to sign up to walk or to sponsor me!! Click this link to get started...http://www.cff.org/Great_Strides/LilChrisChris6765 or you can mail me a check made out to Cystic Fibrosis Foundation, just put "A Cure 4 Lil' Chris" in the memo:)

It's going to be a lot of FUN!!! There will be...

Bagels from Panera Bread

Pizza from Domino's

Happy Meals from McDonald's

Chips from Frito Lays

Fruit from Buehler's

Cookies/cup cakes made by Alma(fellow CF mom:) and her friends

Water from Culligans

Ice provided by Speedway

There will also be some fun entertainment for the kids, so bring the whole family:)...

Wooster Fire truck for the kids to explore

Wooster Police car for the kids to explore

Craft table provided by Pat Catan's

CF temporary tattoo's

CF Frisbee's

They can even ride their bikes on the beautiful walking path:)

If you bring at least $100 in sponsors, you will receive a FREE Great Strides T-shirt!! :)

Special thanks to Clear Picture for airing our CF commercial about our Great Strides Walk!! I will be taking pictures at this years walk for next years commercial;) Thanks to the Daily Record for the beautiful article about CF and the walk too!! Thanks so much for helping spread the word about Cystic Fibrosis!!!

Thank you to those who have sponsored me so far, in no particular order...

Aunt Mar

My Daddy

Uncle Joe and Aunt Diana

Elizabeth & David

Gram D

Aunt Caroline

Carol S

Al S.

Audra C

My mom

Katy & Joe U

CiCi's Pizza

Also, special thanks to my sister D, my SIL Steph, Oma & Opa, and Amy K for raising money for A CURE for Lil' Chris too with their own Great Strides page and their own walks in NJ and NC!! THANK YOU TO ALL WHO SPONSORED THEM!!!

BIG THANKS to my fellow Kohl's associates for volunteering their time to go to FOUR "Associates In Action" events at CiCi's Pizza so far and raising $2,000!!! YEA!! Our goal is to raise $5,000 by the end of Summer:) After the walk next Sat, we will be 1/2 way there:) Gotta LOVE KOHL'S and their AWESOME employee's;)!!!

I hope everyone has a very Happy Mother's Day, esp my fellow CF mamma's...squeeze those kids a little bit tighter, even if they don't want it...they have to, it's YOUR DAY:)!!!

PS. May is CF awareness month, so I've been doing "31 day's of CF" on Facebook if anyone wants to follow. I post a little bit about CF everyday:) I may post them all on here eventually:)

DISNEY!!! YEA!!!

2011-05-03T12:40:00.001-04:00

Well, it's official!!! WE ARE GOING TO DISNEY!!!!! YEA!!!!!!! I just booked it!! :)

It may hurt us in the long run since we can't really afford it right now, but it's something I've ALWAYS wanted to take Lil' Chris to. Ever since he was diagnosed, I've wanted to take him to Disney. I never got to enjoy it as a kid, but I DID get to enjoy it as an adult numerous times now (starting with our Honeymoon;-)
With Cystic Fibrosis, you just never know when it may turn for the worse. Even though Lil' Chris is so "healthy" right now, it could all change in a blink of an eye. I've seen other CF kids doing just fine and then they catch a bad bacteria in their lungs and within 6 months to 1 year they are gone. I always thought to myself...if that were to ever happen to Lil' Chris before I got to take him to Disney, I would NEVER forgive myself. Well, now I don't have to worry anymore...well, not about Disney that is;) He is healthy and doing well, and we are going to enjoy watching every second of his excited face on every aspect of our Disney trip:) I can't wait!!! I LOVE to see his beautiful, excited smile:) It's going to be a BLAST!! Ayla is going to love it too!!

If CF has taught us anything, it's that life is too short! Why wait? Take advantage of the time you have together, b/c you never know what tomorrow brings.

Here is a pic of Lil' Chris and Chris looking at the pics of our Disney Resort. (He DID have a very excited face right BEFORE I took this pic...oh well LOL:) We are staying 6 nights at the Pop Century Resort with the Quick-Service Dining Plan, Park Hopper Plus, and Waterpark!! Pop Century has THREE pools, one in the shape of a bowling pin...Lil' Chris LOVES bowling:) AND...it has HUGE cell phones at each end of one of the complexes!! We all know Lil' Chris AND Daddy LOOOOOVE cell phones;-) LOL! Ayla and Mommy love them too;-) Hee hee :) They both LOVE rides too. Neither one ever says "No" to a ride, so this vacation is going to be SOOOOO MUCH FUN!!!

Less than 2 weeks before our CF walk on May 14th, so if you haven't signed up to walk or donate yet....click here:)

Thanks, and pray we have beautiful weather for our walk and our Disney trip:)

In the Newspaper!!! / Cough Update / Ice Skating

2011-04-28T21:47:00.000-04:00

Lil' Chris and his buddy, Brady. There first time ice skating:)

He looks like he is having fun and enjoying it, doesn't it?? Yeah....not the case. He wanted to get off the ice practically as soon as he got on;-) LOL! Not sure how I got such a good smile out of him for this pic:) LOL

Those who live close to us may want to check out The Daily Record newspaper soon;-) Lil' Chris and I got our picture taken tonight for the "President's Cookbook" section of us cooking Baked Ziti in our kitchen:) "Thanks Mary for the setup!" I'm not sure if they will use the pic of both of us or just me. There will be an article with a little bit of info about us and some recipes that I submitted.....I know, I know.....those of you who know me are thinking, "What????" Yes, I may not be the best cook, but I got some good recipes that I've had for a while;-) After all, my specialty IS Baked Ziti:) LOL

The recipes I submitted were........you thought I was going to tell you, didn't you;-) LOL!! I guess you'll just have to wait and buy the paper;) HaHa:)

They are also going to do a separate article and pic about our upcoming Great Strides Walk for May 14th at 9am by Ida Sue School:) YEA for Cystic Fibrosis Awareness!!!!

Don't forget...my next CF fundraiser is on Thurs May 5th at Wooster CiCi's Pizza from 5p-8p!!

If you haven't donated yet, there is only 2 weeks left!!!!! (I'll still accept donations after the walk;) Click here to donate today, any amount helps!!

Thank You So Much to all those who have donated so far!! We GREATLY APPRECIATE IT!!!

Have a GREAT weekend!
M
PS. Both kiddos have been coughing lately. They mainly wake up in the morning coughing;( Lil' Chris woke up in the middle of the night coughing for a little while. Please pray it goes away on it's own before his annual CF clinic appt on May 18th. Ayla's nose is still running, but I think she is just cutting teeth.

CF Fundraiser Results!!!!

2011-04-23T12:19:00.000-04:00

Jayde getting her face painted by Melissa :)

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

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

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

Melissa M.

Beth Z.

Sharon H.
Sherri M.

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

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

Carrie & Gideon

Ryan, Tiffany, Jayde & Rylee

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

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

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

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

HAPPY EASTER!!!

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

2011-04-18T17:10:00.005-04:00

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:)

1st Colds in 7 months;(

2011-04-16T12:29:00.000-04:00

Well, Lil' Chris ended up catching Ayla's cold too;-( I guess I can't complain too much since this is their first cold in 7 months:) But... you can guarantee that we won't be going on anymore vacations without our Vitamin D:) Vitamin D really does help build up their immune system along with the AWESOME air purifier that we have!!

Lil' Chris usually develops a cough after his colds, so please pray that he doesn't this time since Nathan will be visiting us next week for Easter. He has been coughing a little bit this morning though already;( Hopefully some extra Vest time will help. Chris and I haven't caught their colds yet, so please pray that we don't. Even though Nathan's counts are all good, I would still hate it if he were to catch anything from our household:(

The pics above are the 2 sweet rides from Grammy R! Thanks Grammy!! They LOVE them!! This should be a FUN Summer:)

Have a GREAT Weekend!!

PS. Don't forget to join us this Wed 4/20 from 5-8p at CiCi's Pizza in Wooster for my CF fundraiser:) Enjoy a Great meal for a GREAT cause!!

Vitamin D Experiment / Mini Vaca

2011-04-13T22:12:00.002-04:00

Well, my test about Vitamin D was right!! None of us has had a cold since 9/6/10 and then we went on a mini vacation this past weekend and I didn't give them their Vitamin D....and Ayla ended up catching a cold;-( Please pray that it doesn't spread to all of us, especially Lil' Chris! Note to self....Don't leave home without your Vitamin D!!!! :) Maybe it was a coincidence, but maybe not:) I'm not going to take the chance next time, it's too risky for Lil' Chris. He was complaining of a sore throat off and on today, but no runny nose yet. To all my CF buddies and fellow CF parents out there (and everyone else;).....try taking some extra Viatamin D and see if it works for you! An adult should get about 5,000 iu daily, and for Lil' Chris and Ayla, I've been giving them about 1,500 iu daily which is good for their age. I know of one CFer who said she was going to try it, so how about you??? :) Let me know if it works for you too!! :)

We had such a nice lil' mini vacation:) It was just what we all needed!! It was so nice and relaxing. The 8 hour trip went very fast for me b/c my sister D got me hooked on reading Twilight. LOVED IT!! Now I want to take another long trip so I can read the next book in the series:) LOL!

YEA!!! We FINALLY got to meet Cameron!! My best friend, Christi, had her first baby 4 months ago and I finally got to meet him!! He is just the cutest lil' guy!! He's going to have the girls lined up around the corner with those baby blue eyes:-)

The pic above is of the cousins...Lincoln, Ayla, Nathan, Tyler, and Lil' Chris. Nathan looks great and his hair has even grown back in!! YEA!! He is doing very well, thank you all for your prayers for him and Lil' Chris:)

One more bit of good news....my new District Manager told me today that he is going to come to our walk for Cystic Fibrosis on May 14th here in Wooster!!!! YEA!!! Thanks Jason!! Good thing I got everything all set to go LOL:)...food, entertainment, prizes....I'm READY and can't wait!! :)

PS. Don't forget...next CF fundraiser is on Wed April 20th from 5-8p at Wooster's CiCi's Pizza!!

CiCi's Fundraiser / Thank You's:)

2011-04-05T20:40:00.000-04:00

Last nights CF fundraiser at CiCi's Pizza was a hit!! LOL :) It's a long story, so I'll spare you the details...I will tell you that the downpour of rain did not help the situation any;-) LOL I'm just glad that my SIL's poster of Lil' Chris didn't get all wet and ruined.

Thank You to Josh from Welcome to Joshland for the AWESOME flyer he made for me to put out at my fundraisers!! THANKS JOSH!! I put them on yellow paper and they looked AWESOME!!

Special thanks to some friends that ventured out into the rain to come support Lil' Chris...

Vickie D and her husband

Sean and Michelle(thanks guys for your generous donation:)

BIG THANKS to my Kohl's girls...

Jill

Stacie M

Melissa M

and Donna H who saved me by coming at the last minute to be my 5th person to get the $500 grant! THANK YOU DONNA!!!

Woo Hoo 2 under our belt!! 8 more to go to hit our goal of $5000 raised just from Kohl's AIA events!! WE CAN DO IT!! It's for a GREAT cause:)

My upcoming events at Wooster's CiCi Pizza from 5p-8p are:

Wed April 20th (this was April 21st, but I changed it to the 20th)

Thurs May 5th

Thurs May 26th

And don't forget....our 2nd Annual Walk for a Cure for Cystic Fibrosis will be on May 14th at 9am at the Hewitt Cowels Pavilion by Ida Sue School in Wooster!!! ....Wow, I just sounded like my commercial! LOL!! Everyone at work keeps telling me that they have seen my commercial a bunch of times:) Some tell me it's creepy b/c they keep hearing my voice in their living room;-) LOL!! I went to Best Buy the other day to drop off some papers for volunteers for the walk, and the manager said "Yeah, I know what your talking about, I've seen the commercial for it!" :) LOL! Thanks again Clear Picture for playing our commercial so much! You guys ROCK!! (if you haven't seen it yet, it's posted on this blog under the header pic at the top:)

Click here to sign up today to walk, or if you can't make it you can always click here to donate:)

Another BIG THANK YOU to Amy K from work. She has raised $135 in sponsors already!! I asked her how she does it b/c she raised a lot last year too, and she said "It's no big deal, I just type up a letter and email it to my friends and family and then they donate!" Wow, You Go Girl!! THANK YOU, THANK YOU, THANK YOU!!!!!!!!

Thanks everyone!

PS. Coming soon....a BIG thank you to all my sponsers so far for my Great Strides Walk 2011:)

CF Fundraiser Tonight at CiCi's Pizza 5p-8p!!!

2011-04-04T11:19:00.001-04:00

Last years "A Cure 4 Lil' Chris" team...Thank You Everyone who attended and showed your support for Lil' Chris!!!

Join us tonight 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:)

Save the following dates for my upcoming Wooster CiCi's Fundraisers for Cystic Fibrosis:

April 21st 5-8p

May 5th 5-8p

May 26th 5-8p

As always, you will see 5 Kohl's associates volunteering their time to help find "A Cure 4 Lil' Chris" and help us get a grant of $500 each event for the Cystic Fibrosis Foundation:)

Special thank you to tonight's Kohl's volunteers:

Me:)

Stacie M

Melissa M

Jill

Kaitlyn G

Special thanks to Barb and Helen to offer to come if one of the girls can't make it:) You guys ROCK!!! Thank You So Much Girls!! It means the world to not only us, but ALL CFers!!!

If you can't make our fundraiser tonight but would like to donate, click here to make an online donation for

"A CURE 4 Lil' Chris!"

See you tonight at 5pm:)

Test Results / Cure to the Common Cold???

2011-04-02T11:14:00.001-04:00

Here are the results from Lil' Chris' chest x-ray, blood work, and throat culture from last month and what the dr said about them...

-Chest x-ray came back normal. YEA!!! :)

- vitamin D level is normal- "this is great and hard to do in the winter" the dr. said :) I guess the Coromega Omega3+Vitamin D and the gummy Vitamin D's I have been giving him this winter really helped!! We are going to continue to give the kids these year round since the whole house went ALL WINTER WITH NO COLDS!!! Can you believe it??? This was a first!! My husband and I had a sore throat at one point, and I remember feeling sick one day, but completely fine the next, so I guess it was just allergies, but THAT WAS IT!! Have we found the CURE to the COMMON COLD??? My Dad was the one who told me about Vitamin D and I guess he was right!! Maybe it IS the cure to the common cold!!! "THANKS SO MUCH DAD!!! It's soooo important to keep Lil' Chris as healthy as possible and your knowledge on Vitamins has helped him soooo much over the last 3 1/2 years of his life!! Between all the Vitamins you gave me to take when I was pregnant with him, and all the Vitamins you suggest he take like the Omega 3 and Vitamin D and Vitamin C's, AND with the AWESOME air purifier you gave us, and your knowledge on how important exercise is to the lungs, and not to mention your awesome donations to the CFF....I honestly believe you have single handily helped save and extended my son's life!!! I will never be able to repay you!! All this combined is the greatest gift you could ever give me....a "healthy" Cystic Fibrosis son!! I LOVE YOU, DADDY!! YOU ARE THE BEST DAD IN THE WHOLE WIDE WORLD!!!!!"

- allergy testing: "Looking at his results, the only thing that probably causes a problem, or is high enough to consider abnormal, is cats or cat dander. I would still avoid broccoli (that lab is a special send-out) since after you have a reaction, the next reaction can be more severe."

- GGT- "this is a test of liver health, as are some other tests that were sent (AST, ALT). His GGT is mildly elevated(his GGT=50 and standard range is between 3 - 22), and something we will likely keep an eye on over time, but nothing to act upon right now." ;-( I'll definitely be asking about this at our annual visit!

-Throat culture- sensitive staph aureus like the last few times. YEA!! No big bad bacteria!!! Thank you Lord, b/c Nathan, my nephew, is coming in a couple of weeks and if Lil' Chris had a bad bacteria, then they wouldn't be able to be around each other since Nathan has Leukemia.

We will go over everything in detail at his annual visit next month, so I'll let you know more then. As for an update on Lil' Chris...he continues to do GREAT!!! He amazes me everyday when I look at him and think about how much worse it could be right now. I'm praying, praying, praying that a CURE will be found before he gets worse!! The donations have been rolling in, so that gives me HOPE:) Thank you to all who have donated so far!! It literally means the world to our family!! If you haven't donated yet, but would like to, click here to make a difference today!!

Thank you for all your prayers and keep them coming!! :)

CiCi's Pizza CF Fundraiser Results

2011-03-24T21:55:00.001-04:00

The CiCi's Pizza fundraiser for Cystic Fibrosis the other night went GREAT!! It was a slow night, but it was still fun hanging out with my 4 other Kohl's associates:) Afterwards, I realized that I totally forgot to take some pictures;( Next time I try to remember so I can post them on here;)

We raised about $100 in the raffle for a free 1 hour massage at Tips, Toes, & Beyond, not bad for a slow night. Not sure how much in the 10% from the receipts yet, maybe $60??? Best of all....thanks to my awesome co-workers....we will be getting a $500 grant from Kohl's!!!! Isn't Kohl's the BEST!!!! So that makes the total around $660!! Woot Woot!!

I'm so proud to work for a company that gives millions away to tons of great causes!! Cystic Fibrosis was in the top 10 or top 5 last year for getting the most grants from Kohl's, I believe!! That's AWESOME!!! My store recently switched districts and I was so proud to see that some of the stores in this district are already signed up to do some events for Cystic Fibrosis!!! I'm going to try to get a few Kohl's stores to come to our walk, although we are kinda far for most of them though. If I can get 3 other Kohl's stores to bring 5 associates each to our walk, then Kohl's will give us a grant of $2,000!!!! Woo Hoo!!

So again, thank you to my AIA girls for helping out at CiCi's the other night....You girls ROCK!!

Barb N

Kayla

Rebecca G

Melissa M

My next CF fundraiser is on Monday, April 4th between 5-8p at the Wooster CiCi's Pizza!! Save the date and spread the word!! I hope to see you there:)

M

PS. Lil' Chris has been doing GREAT!!! I will post about his results from the CF clinic visit the other day as soon as I get the throat culture result back. I got all the other results back, but am waiting for this last one....the dreaded one:( Please pray that there is no BAD bacteria in his lungs!!!

CF Fundraiser Tonight at CiCi's Pizza 5-8p!!!

2011-03-21T13:25:00.005-04:00

Last years "A Cure 4 Lil' Chris" team...Thank You Everyone who attended and showed your support for Lil' Chris!!!

Join us tonight 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 1 hour massage at Tips, Toes, & Beyond!!

Save the following dates for my upcoming Wooster CiCi's Fundraisers for Cystic Fibrosis:

April 4th 5-8p

April 21st 5-8p

May 5th 5-8p

May 26th 5-8p

As always, you will see 5 Kohl's associates volunteering their time to help find "A Cure 4 Lil' Chris" and help us get a grant of $500 each event for the Cystic Fibrosis Foundation:)

Special thank you to tonight's Kohl's volunteers:

Me:)

Barb

Kayla

Melissa M

Rebecca G

Thank You So Much Girls!! It means the world to not only us, but ALL CFers!!!

If you can't make our fundraiser tonight but would like to donate, click here to make an online donation for

"A CURE 4 Lil' Chris!"

See you tonight at 5pm:)

CF Clinic Visit 3/16/11

2011-03-16T22:51:00.000-04:00

Lil' Chris had his 3 month check up today. He did a GREAT job!! I can't believe how big he is getting!! He laid down on the table to get his throat culture and I just had to take a pic b/c he looked sooooo big!!! I remember when he was just a little baby laying on that table. It's crazy to think we've been there probably about 20 times already and he's only 3!! We go back again for his annual visit on May 18th at 9am. That's going to be a loooong day!! That's when we see all the dr's and nurses and social worker and physical therapist and food therapist and everyone.

Overall, he had a GREAT visit! The dr said his lungs sound really good and she was surprised that he is very healthy! Our regular dr wasn't there, so we had a young dr we never met before. I told her about how he got a rash on his body for like 3 days after eating fettuccine alfredo with broccoli, so she ordered a blood test to see if he is allergic to broccoli and suggested we see an allergist. I told her that I was going to try it one more time to see if that was it, but she said not to b/c he could have a worse reaction like his lips swelling or wheezing. She also suggested Albuterol to have just in case he ever wheezes or gets short of breath and b/c he has been coughing in bed the last 2 nights and his nose has been stuffy at night too. She suggests we do 2 puffs before Vest time in the morning and 2 at night too. Chris and I don't think that he needs it and that it's probably just allergies b/c our allergies have started too. So we are just going to keep the Albuterol on hand just in case he ever gets short of breath or starts wheezing. It's never happened before, so I'm hoping and praying we never have to use it. I'm sad in a way that he has it, but glad that we have something on hand for just in case purposes.

His weight was 37 lbs and 3 oz (71st percentile) and 3 months ago it was 36 lbs and 2 oz. His height was 40 inches and 3/4 (76th percentile) and last time it was 40 inches. His BMI was 50 and last time it was 55, but they usually don't worry unless it goes below 50. So his numbers were all pretty good, Praise the Lord!!

After our visit, we waited 1 hour to get his blood work done, then we had to wait again to get his chest x-rays for his annual visit in May. They like these to be done before the annual visit so that they can go over the results with us on the actual annual visit. He did a great job getting the needle or "shot" as he calls it;) No tears, just a little whimper. He did a GREAT JOB getting his chest x-rays!! No tears at all and he laid really still and did exactly as the lady told him!! He got one laying on his back and another on his left side. I went in with him this time, so I got some pics;-) LOL! The last time I went in with him was when I was pregnant with Ayla and didn't know it. Poor Ayla;(

After that, we went to Chuck E Cheese for lunch and some fun:) Then we came home and had some fun on the scooters and motorcycle:) They had a blast!! It was the first time Ayla got to ride her new scooter that she got for Christmas! She did a Great job pushing on the gas pedal, but....steering....that will need some work;-) LOL

Make photo slide shows at www.OneTrueMedia.com

Thank you so much everyone for your continued prayers!! They are definitely working!!
M

Don't forget...CF Fundraiser this Monday at Wooster's CiCi's Pizza between 5-8pm!! There will be a raffle for a FREE 1 hour massage!!

2011 Great Strides Commercial!!!!

2011-03-12T21:33:00.005-05:00

Here it is!!! Our 2011 Great Strides commercial that will be playing in all of Wooster and Massillon Ohio!!! YEA for Cystic Fibrosis Awareness!!! Huge Thank You to all who are apart of this commercial and who walked with us last year:) Hope to see you again this year on May 14th at 9am at the Hewitt Cowles Pavilion by Ida Sue School!!! There will be bagels from Panera Bread, pizza from Domino's, chips from Frito Lays, and water from Culligan's. There will also be a craft table for kids thanks to Pat Catan's, and a Fire Truck to play on thanks to Wooster Fire Department:) YEA!!! It's going to be SOOOO MUCH FUN!!!

BIG THANK YOU TO CLEAR PICTURE FOR PLAYING OUR CF COMMERCIALS FOR THE PAST 3 YEARS!! IT'S HUGE AWARENESS FOR CYSTIC FIBROSIS AND I CAN'T THANK THEM ENOUGH!! THEY ARE THE BEST CABLE COMPANY EVER!!!
Let me know what you think:)
M

CF Update / Ayla's Potty Training

2011-03-10T22:29:00.006-05:00

Lil' Chris has a CF clinic visit coming up on 3/16 and his cough has gotten much better! Some days he coughs a little and others he doesn't cough at all...weird, but I'm just glad that it is sounding better than before. Thank you all for your prayers and keep 'em comin;-)

Week 1

Week 2

Ayla has been doing GREAT potty training!! She got 7 stickers yesterday!! WooHoo!! She's been only having about 1 accident a day! Not bad for a 25 month old and only being trained for a week and a half!! I'm so proud of her!! She even likes going on the BIG potty already:) One problem though....she's too smart!! She learned pretty quick that in order to get Mommy's full attention, all she has to say is "Poopy on the potty, Mommy!" So of course I put my fundraising stuff away and jump up to go put her on the potty.....and.....then....she....directs me to the couch instead. She just wants to sit with Mommy and play:) She's too funny! She gets me every time, b/c the one time I don't....well...YOU know;-) LOL

Been making good progress with fundraiser stuff:) I just need another day without the kids so I can make some phone calls for the walk. Got some good raffle prizes and Chris and I are almost done making the CF commercial!! Once the commercial is done, I will put it on my Great Strides page and then be emailing everyone on my email list for donations, soooo....get your checkbooks ready everyone;-)

I have a request, my nephew Nathan could really use your prayers. He has Leukemia and his counts are low which is dangerous and he isn't able to take his full chemo. Please keep him in your prayers.

Thanks for all your prayers!!

PS. Don't forget to join us on Monday, March 21st at CiCi's Pizza in Wooster between 5-8pm for my first fundraiser for Cystic Fibrosis for 2011!!!

Learn about VX770 & VX809 / Walk Update

2011-03-02T18:17:00.000-05:00

If you want to learn more about the new drugs VX770 and VX809, then click on Lungs Behaving Badly to go to another CF moms blog who did a GREAT JOB explaining it! Gemma has a daughter named Sophie who is a couple months older than Lil' Chris and has Cystic Fibrosis and Tracheo-Oesophageal Fistula and Oesophageal Atresia. She is just adorable!! Gemma always leaves me great encouraging comments on this blog, so I just adore her too:)

I hope you check it out....these drugs are the future of CF and they are the reason I do all my fundraising...plus....Gemma has a GREAT blog:)

On a Great Strides Walk update... I got a couple of call backs today and we now have Frito Lays chips and 10 bags of ice from Speedway all donated!! YEA!!!

Here's what the kids like to play with...(remind me again why I bother buying toys???;-) LOL

Have a GREAT day!!

M

Productive Day!! :)

2011-03-01T22:47:00.002-05:00

Ahhhhh if feels so good to be back in the fundraising mode again!! That is....only when the kids aren't around driving me nuts and I can actually get some stuff done!! ;-) LOL! Chris took the kids out for a drive and some lunch while I made calls.

Chris and I both had off today, so we tried to get as much done as we could for the walk today. Oma came over to help too...thanks Oma!

Here's what got accomplished today:

Made all my calls about getting food and entertainment for the walk. Now it's just the waiting game of waiting to hear back from them before I call them again;) lol

Found out how we can get electricity for the pavilion this year

Got letterhead ready to get Pat Catan's to do a craft at the walk

Clear Picture gave us the okay to do another commercial for our walk this year AND they are going to not only play it in Wooster, but they are going to play it in the Massillon area too! YEA!!! I also got a couple of pics from Heather, who has 2 kids with CF, that I am going to put in the commercial!! Now Chris and I just have to find some quite time so we can record it...that's not always easy with 2 screaming kids;-) lol

The Daily Record is going to print something up in the newspaper over the next couple of days about the walk and then will do a full article with a pic closer to the walk date

Dropped off some flyers at the pediatricians(they always keep them at the check-out window for me:)

Worked on making new flyers for the tables at my fundraisers, just need to print them now. Chris fancied them up with a picture this year:) YEA!!

Got form for fruit donation, just need to drop it off at Buehler's soon

Got some raffle prizes from Red Lobster, Applebee's, BW3's, and Tractor Supply & Company.

Best of all......I FINALLY GOT A GREAT PIC OF LIL' CHRIS DOING HIS VEST!!! Now I can put that on ALL my fundraising stuff:) YEA!!!! Boy was that rough!! It really takes both me and my husband to accomplish this! I snap away while my husband stands near me and tries to make him laugh or smile. Thanks Honey for helping me out so much today!! I couldn't have done a lot of this stuff without your help!!!

I was also able to get this great pic for the new header pic for the blog;) I love it b/c he always does this whenever one of his hoses pops out... he uses it like a hairdryer:) LOL
So, I feel MUCH better knowing that I got a lot accomplished today for the walk!! I can take a deep breath of relief;-)

Some more good news....Chris and I can't remember Lil' Chris coughing at all today!! That's a GREAT sign!! Maybe his cough IS going away all on it's own!!! Only 15 more days til his next CF clinic visit at Children's Hospital!!

Please keep Lil' Chris in your prayers...they are definitely working!!!

Thanks,
M
PS. HAPPY BIRTHDAY TO MY SIS-IN-LAW STEPHANIE!!!! WE LOVE YOU!!

Venting / 1st Fundraiser of 2011 Coming Up

2011-03-01T08:06:00.000-05:00

YEA!!! I got my first sponsor!! Thank You Aunt Mar!!!! You won the 1st sponsor of 2011 award;-)

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

I've updated my Great Strides video with a couple of new pics, but kept the rest the same. If I had the time and energy, I would redo the whole thing, but my plate is kinda full at the moment. I made a list of all that I have to do to get ready for the walk, my fundraisers, and to get raffle prizes ...and....well...it's a lot!

Organizing a walk takes a lot of effort and time. Something I don't have either of right now. I don't have the time that I used to anymore, b/c Chris and I are hardly ever home together anymore. When it's just me and the kids, I can't seem to get anything done b/c they just want to play with Mommy instead of Mommy "working." I hate that I have to tell them, "Mommy has to get some work done right now, I'll play with you when I'm done." I feel like that's all I say to them at this time of year, b/c if I'm not busy "working" on the walk or fundraising, then I'm busy "working" on the laundry or dishes or vacuuming or cleaning and organizing their drawers and closets for the change in sizes and season!! I do all this AFTER working a full time job!! Oh yeah, and my back still hurts;(

Not only do I have a list of fundraising stuff, but I have a list of other things that need done around the house too that I just can't seem to get to or have the energy for... like take everything out of the fridge and clean it, steam the hardwood floors, make some sense of our messy basement, clean out my own drawers and closet, clean out the junk drawers, etc....

I think I get like this every year right before my first fundraiser, b/c there is so much work. I have to make new flyers, new poster, new signs, get raffle prizes, etc. Once I get that first one done, then the next ones are a breeze. It's just all so overwhelming right now!! I think that's why I don't have the energy! This time of year, I wish my husband was a stay at home dad so that he could help by doing all the day to day chores, so that I could concentrate on fundraising since he doesn't seem to want to do that kind of stuff, but not too many guys do;) LOL

I know I'm just stressed out now, but once I get more things for the walk and my first fundraiser done and more donations, I'll feel a lot better:) Luckily I'm the type of person that can walk into work and forget about all my stress at home. I "leave it at the door" as they say;-) Many coworkers didn't even know my son had a fatal disease until I did our first A-team(AIA) event for Cystic Fibrosis when he was about 1 year old! I'm not one to talk much about my personal life at work, I'm one to work and see what I can make better:)

Thanks again to Aunt Mar for starting us off this year, and thank you to Panera Bread for donating 100 bagels for the walk this year!!! This makes me start to feel better:) YEA!!

Join us for our first fundraiser of the year on Monday, March 21st at CiCi's Pizza in Wooster between 5pm and 8pm to help find a CURE for Cystic Fibrosis!!! There will be a raffle for a 1 hour massage at Tips, Toes, and Beyond, and a percentage of your receipt will go towards a CURE!!

Thanks for letting me vent, I needed that;) LOL
M
PS. Lil' Chris' cough seems to be getting better, so thank you to everyone for all your prayers:) We started potty training Ayla this past Saturday night, and she hadn't gotten any stickers on her chart(actually gone peepee on the potty) until Monday night. Hopefully she trains faster than Lil' Chris:-)

CF Update / MORE SNOW!!!

2011-02-25T12:49:00.000-05:00

Thank you everyone for the birthday wishes yesterday:) Special thanks to my hubby for the birthday post and for taking me to Castaway Bay Indoor Waterpark;-) We had a BLAST!! It was our first time at this indoor waterpark. It is part of Cedar Point Amusement Park.

Our CF doctor called today to see how Lil' Chris' cough is and she said to wait and see for now since he isn't coughing all the time and it isn't as bad as it was before we started the Bactrim. She said to call back if it gets worse before out CF clinic appt in a couple of weeks. Please pray it goes away on it's own. It wasn't quit the response I wanted, so we'll see how this plays out.

Today we got MORE SNOW!!!! Ughhhhh!!! I really hope this is the last storm!!! I'm sick of driving in it, esp after this past Monday! Well, I gotta go b/c I'm going to have try to snow plow for the first time since Chris is working;( This should be interesting, it looks like 6-8 inches!

Have a safe and great day!

HAPPY BIRTHDAY MICHELLE!

2011-02-24T00:35:00.001-05:00

Hope you have a great birthday. We love you!

CF Update / Positive Results for VX-770 Study!

2011-02-23T16:27:00.000-05:00

Lil' Chris finished his Bactrim last night for his cough, but of course....he is STILL coughing!!! Arggggg!! So I called the CF clinic today and left a message. This is the first time this has happened, so I'm curious as to what they are going to do...maybe refill the Bactrim, or wait a little to see how he does, or wait and then put him on something different??? IDK. Do they even HAVE to wait?? I guess I'll find out when they call me back. Hopefully they call today!! His cough isn't super bad or all the time, but when he does cough...it doesn't sound the greatest. It just makes you sink and wonder what's going on in those lungs of his. I just pray it's not "the bad bacteria"...Pseudomonas.

Oh, and he also had another bad night on the 19th where he was throwing up again. We don't think he had any soy protein, so not sure why he keeps doing this. That makes 3 times in the last couple months I think. I wonder if we need to adjust his enzyme intake. I'll be asking the dr on 3/16 when we go for clinic visit. The pic above is him in between throwing up. Notice the trash can right next to him?? lol! If it's right next to him, he never gets it on the floor. He's pretty good about knowing when it's coming and when to get to the trash can. He's had enough practice, that's for sure. Poor kid.

Our snow FINALLY almost all melted a few days ago when we had like 60 degree weather, but that didn't last long!! We got hit again on Monday! Of course I had to drive home from work at the worst time!! But...I lived to tell about thankfully!! It was about 4-5 inches on top of 1 inch of ice and coming down hard! Cars were sliding all over the road, including me! Unfortunately, any way I go to my house there is a hill going down and up;( This time the roads were so bad that I started sliding down one hill sideways. I thought I was going to slide into the cop car at the bottom that was blocking the way coming up the hill I guess b/c cars were just sliding down it. Crazy, Crazy, but I made it home:) The Angels guided me the whole way!! Thank you Lord!! The pic above is the next day after my hubby snow plowed:) Thanks Honey!!

Now the following is some really encouraging news from the Cystic Fibrosis Foundation(what your donations for Great Strides fund). Lil' Chris' mutations are Double Delta F508(most common), but it's still promising for him...(click here for the whole article)...

Phase 3 Study of VX-770 Shows Positive Results

February 23, 2011

The Cystic Fibrosis Foundation and Vertex Pharmaceuticals announced today that VX-770, an oral medicine in development that targets the defective protein that causes cystic fibrosis, showed promising results in a Phase 3 clinical trial.

The trial was designed to evaluate patients age 12 and up who carry at least one copy of a CF mutation called G551D. The study included 161 patients who received at least one dose of VX-770 or placebo.

Patients who took the drug, compared to those on placebo, showed a marked improvement in lung function at 24 weeks, which was sustained for the duration of the 48-week trial.

Patients also showed improvement across all key secondary endpoints in the study, including reduced likelihood of experiencing a pulmonary exacerbation, decreased respiratory symptoms and improved weight gain. Each of these areas is critically important to the health of people with CF.

In addition, average sweat chloride levels of patients on VX-770 dropped toward normal levels, while those on placebo did not change — indicating the drug is impacting the underlying defect in CF. Excessive sweat chloride (salt) is a key clinical indicator of CF.

VX-770 is being developed by Vertex, and was discovered in collaboration with the CF Foundation, which provided substantial support to Vertex throughout the development process, including an approximately $75 million investment.

About four percent of people with CF carry the G551D mutation. More studies are needed to determine whether other CF mutations may benefit from VX-770.

“These results are highly encouraging. They provide scientific evidence that support our long-standing belief that targeting the underlying defect of CF may have a profound effect on the disease,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “We have much more to do to end the suffering caused by this disease, but these data are extremely exciting, especially for people with the G551D mutation and their families. The results also offer significant hope that a similar approach to treatment may help the majority of patients living with CF.”

The Phase 3 data support Vertex’s plan to submit a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in the second half of 2011. Generally, the FDA takes between 6 and 12 months to review and rule on a drug application.

“The Cystic Fibrosis Foundation has played an instrumental role in our more than 10-year effort to discover and develop potential new CF medicines such as VX-770,” said Matthew W. Emmens, chairman, president and CEO of Vertex. “The data announced today reflect a significant investment of time, dollars and scientific expertise from both Vertex and the CF Foundation, and we look forward to working closely with the Foundation as we seek to bring VX-770 to people with CF.”

Said Preston W. Campbell III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation: “As a physician who has treated CF patients for many years, the VX-770 results are more than just numbers — they represent hope.” He added, “It’s not surprising that patients felt better on the drug because of the magnitude of lung function improvement and weight gain. These are important clinical outcomes, and the fact they were maintained through 48 weeks is very encouraging.”

New CF Mom Blog / CF Update on Lil' Chris

2011-02-18T21:27:00.000-05:00

I met a new CF mom today, so I thought I would share her blog with you all. She has a 7 month old with CF. Her daughter's name is Caroline Josephine and she is just the cutest thing!! She just cultured Citrobacter Fruendii and Psuedo. She could really use your prayers.

So come on CF Community!!! Let's pull together and give her some bloggy love:) Stop by, say Hi, "Follow" her blog, and keep her in your prayers along with all our other CF buddies!!

Click here to go to her blog.

Thanks,
M
PS. Lil' Chris is STILL coughing. The medicine is getting lower in the bottle....praying his cough goes away before the Bactrim is done.

Hit 800 HOURS on the VEST on Valentine's Day!!

2011-02-17T16:15:00.001-05:00

I can't believe my lil' boy has wasted 800 hours of his life doing his Vest treatments!! Erks me, but when I think about how much it helps him, I don't mind as much;) He's getting more and more into playing his DS games now as you can see in the pic above;-)

He actually hit 800 hours on Valentine's Day!! The day before Valentine's Day, the kids and I made cards for Daddy by doing paint hand prints:) Then while I was working on Valentine's morning, they made cards for me with Daddy:) We had a fun day once I got home from work. We opened cards and presents, then played with Big Foot(one of Lil' Chris' presents;) He was a little scared of it...well, he still is scared of it, but he loves it tho;) LOL!

Then we made Valentine cookies!! The kids had a blast helping!! Daddy...not so much, but he helped anyways;-) LOL! They turned out pretty good!!

After that, we went to go watch Daddy play his last indoor soccer game! Spencer gave us all Valentine's;-) Thanks Spencer!! The kids had fun playing and running all over esp at half time when they got to go out on the field. I always feel bad taking them out there, b/c then the guys feel like they can't practice. They are all nice and let Lil' Chris shoot some goals:) Thanks guys!! Daddy signed up to play another session that starts next week!! YEA!!

Photo and video editing at www.OneTrueMedia.com

Chris and I celebrated Valentine's Day the day before by going to dinner and a movie!! We saw "Just Go With It" with Adam Sandler, it was great! It was sooooo nice to get out and go on a date with my man:) I wish we could have date night like once a month or something, but our schedules are always weird and I feel bad asking Oma and Opa to babysit even more than they have to. Thanks Oma and Opa for always babysitting!! Special thanks to Oma for helping out with some vacuuming and cleaning too since my back has been hurting:)

Speaking of my back....it's a lot better than what it was, but it still hurts when I lift heavy things or move or bend certain ways. At least I can sleep a little bit better and don't have to grab onto my treadmill when I get out of the bed anymore;-) LOL! I think my back is getting better b/c I haven't been doing as much lifting and I have been stretching and icing it. The Vest machine alone weighs 30 lbs, so I had stopped lifting it up and down, that seemed to help. Now if only Ayla didn't need to be picked up all the time;-) LOL!

Lil' Chris has been doing good with taking his Bactrim. His cough is still def there tho and sounds nasty. I hope it goes away before he is done the Bactrim. BTW....in my last post I posted a video of him coughing....well, I forgot to mention that he was chewing his Chewable Vitamax vitamin when he was coughing, so he didn't actually cough something up and then started chewing on it;) I know it looked that way and I forgot to say something. Sorry to those who watched it and was totally grossed out;-) LOL

Please say a prayer that Lil' Chris' cough goes away and that his cousin Nathan with Leukemia gets better. Nathan just got out of the hospital and has RSV. His counts are low, so he needs a lot of prayer to get them back up.

Thanks,
M

Cough Video / $125 CF Survey

2011-02-11T14:58:00.000-05:00

I'm gonna try to keep this short, but no promises;-)

I didn't post about it before, but Lil' Chris had a bad night the night before Ayla's birthday. We think it was the Chex Mix that he had. That was the only thing he ate that was different. He threw up about 5 or 6 times and was just laying on the couch from nap time to bed time.

Then this past Wed, it happened again! He didn't have anything new, so we still are not sure what caused it this time. He was fine all day, then when he woke up from his nap he was complaining of his head hurting right above his right eye. You could tell he was in a lot of pain, b/c tears were just coming down his face. I felt so bad for him esp since I didn't have any children's Tylenol in the house and I was just about out the door to go to an A-team event for Kohl's(Woo after School Skate Club). I told Chris to go and pick some Tylenol up when Ayla woke up, but he never got to b/c Lil' Chris started throwing up. The A-team event (actually it's called Associates in Action now) was for 3 hours. So afterwards, I called and Lil' Chris was sleeping on the couch, which NEVER happens, and his head still hurt and was throwing up. So I picked up some Children's Tylenol on my way home. He took it, but then threw up, so not sure how much actually got down. He did seem to start to feel better about an hour later though after a few more throw ups. He didn't eat or drink anything though, and we didn't do his Vest just like the night before Ayla's birthday. That's usually the only time I don't make him do his Vest. I don't want to stir anything else up...if you know what I mean;-) He slept good throughout the night other than asking for a drink of water, which I was more than happy to give to him. The next day, Oma said he was still complaining of his head hurting. She gave him more Tylenol before I got home from work and his head seemed better. He was complaining of a bellyache tho, but not for long. We have clinic on March 16th, so I'll have to ask the dr about all of this.

To top it all off....he has had a wet cough for over a week now. I sent a message to the CF clinic about his cough through My Chart. Does every clinic use My Chart??? I LOVE it!! I can send them messages, ask questions, see his chart, see his upcoming appointments, see his throat culture results, and more!! It's a GREAT tool that they added recently. Anyways, to make a long story short....he is started Bactrim last night, 10ml for 2 weeks. Since he was on Augmentin a few weeks ago for an ear infection, he couldn't go on it again, so that is why he is on Bactrim instead. He doesn't seem to mind it tho.

Photo and video editing at www.OneTrueMedia.com

To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $525!!! WooHoo!! You get $50 just for joining!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!!

Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Please pray Lil' Chris' cough goes away quickly and that it doesn't turn into anything serious.

So much for keeping it short;-) LOL!!
M

Ayla's 2nd Birthday Montage!!! YEA!!!!

2011-01-29T16:15:00.006-05:00

I can't believe that my lil' angel turned 2 yesterday!!

HAPPY BIRTHDAY AYLA!!

2 years ago at this time I was in the hospital holding my lil' newborn angel. Ayla truly is an angel from God. Chris and I thought we would never have anymore kids after Lil' Chris was diagnosed with Cystic Fibrosis, but God had other plans for us. We are sooooo blessed to have her in our lives!! God truly blessed her to not have Cystic Fibrosis. I believe she will be Lil' Chris' angel as they grow older, esp when Mommy and Daddy aren't around. She will help guide him in the right direction with all his meds, his exercise, and his relationship with God.

We had a great day yesterday with a few exceptions of the terrible two's starting already;-) LOL! I had off work, so we spent the day playing and then after nap the party began!! Oma and Opa came over and so did our friends John and Andrea and they brought their 1 1/2 year old "niece" Reese. She is such a cutie pie and the kids had a BLAST running around and playing:)

We had dinner, cake, and then Ayla opened all her presents!! She did a Great job opening her presents, Christmas was a good practice;) LOL! She got lots of fun toys and she got her first pair of high heels;-) That's right....I said heels!! LOL! All the kids had fun playing with them...even Lil' Chris...not too sure Daddy was too happy about that tho;-) LOL!!

Today we had so much fun playing with all the new toys! All the toys HAD to wear the tiara;) LOL! Lil' Chris liked playing with the barbies....shhhhh....he liked playing with the wheel too, that's boyish;-) Ayla really liked playing with all the princess stuff and wearing her high heels:)

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

Here's what Ayla has been up to lately:

She still loves to suck on her right pointer finger and cuddle with her blanky when she gets sleepy
She loves her bear(actually is was Lil' Chris' bear). She calls is "Ba Bear" ???
She loves to pull out the bears hair, it's got a lot of bald spots;) lol
She repeats pretty much everything you say to her but makes it into a question by making her cute lil' voice go up at the end;-)
She loves baths and doesn't mind the water in her face
She hates getting her picture taken and will put up her hand or just run away
She has wild crazy curly hair...not sure where she got that from;-) lol
She has gotten her bangs cut 2 times now...still trying to grow out the rest
She loves to sit on my lap and watch TV and screams if Lil' Chris beats her to it;)
Her weight and height is 26 lbs and 35 inches!!
She loves to play and run around with her big brother
She loves to eat
She LOVES apple juice
She says lots of words, but sometimes she doesn't say the end of the word, like for "hot dog" she'll say "hot do."
She can do "angry eyes" very well .... and often;-) LOL
She has the cutest lil' smile!!
She is very lovable and snuggable:)
Lately she likes to be rocked to sleep...shhhhh don't tell Daddy I do that;-) LOL!
She calls Lil' Chris "Ca" like car without the r. She says it so much that she even has me saying it too sometimes!
She's very polite and always says "thank you mommy" or "your welcome Ca" or "Bless you Mommy" even if I'm in the other room and I sneeze:)
All I have to do is say the word "remote", and she runs and gets me the TV remote;)
She LOVES to copy everything Lil' Chris does or says;-)
She is growing like a weed!! She has been wearing 2T and 3T shirts and is in 24months or 2T pants!!
She listens for the most part. If not, you start counting to 3 and she does whatever it is;)
She is very considerate of others. If Lil' Chris falls or if anybody says "Ouch" she says "You okay?"
She usually goes to bed around 8pm or 8:30pm and then wakes up around 8am or 8:30am
She takes one nap a day usually from 1-3 or 4. Until recently(with the terrible two's coming;) she would usually go down for nap or bed no problem. The last few days, she has been doing what Lil' Chris does and calls us to come in there;( ARGGGG!
She just learned to turn the door knob and open the doors
She takes good care of her big brother already. When his Vest is done it's 30 minutes, she calls me until I come and take it off of him while she helps me:) She even tells him to take his pills sometimes;) "Take your pills Ca!"
The best part is....she has been very healthy these last 2 years! PTL! I think she was only on an antibiotic once and that was recently for a little bit of fluid in her ear and a slight cough. I can't complain about that!!!!

I hope you enjoyed the montage...sorry it was so long, but my back hurts enough after sitting here typing all of this;-) LOL!

HAPPY BIRTHDAY AYLA!!

Love,

Mommy

Update / Cancelled Vacation=Skiing and Kalahari!!

2011-01-25T10:10:00.006-05:00

We were supposed to go on vacation to NJ this past weekend, but we ended up not going b/c of the snow;( I was so sad not to be able to hold my new lil' "nephew" Cameron:'(

Since Chris and I both took off work already, we decided not to waste it, so .....

Friday: We took the kids sledding outside:) They had a BLAST!! Ayla and I made snow angels;) Opa fell in love with our snow blower and did our driveway, Thanks Opa;-) LOL!

Saturday: Chris and I went skiing at Snow Trails. It was SOOOOO much fun!!! I haven't been skiing since before the kids were born, I think! I missed it sooooo much! I felt free as a bird coming down those slopes!! Thanks Oma and Opa for watching the kiddos:) It's been a while since Chris and I got to go on a date like that all day:)

Sunday thru Monday: We took the kids and Oma and Opa to Kalahari (the world's largest indoor waterpark). We all had SOOOOOO much fun!! There is so much to do there for every age!! I wish we had time to do it all!! It was kinda busy on Sunday AND Monday!! Was there no school this Monday or something??? We still had fun:) Lil' Chris went on his first BIG slide with us!! It was a 4 seater raft ride and it was an enclosed tube ride too, so it was very dark and scary...but he did GREAT!! He had a BIG smile on his face at the end:) Chris and I really enjoyed the indoor/outdoor hot tub:) It felt sooooo good, esp on my back when I sat in front of a jet! It was kinda neat sitting outside in a hot tub in my bathingsuit while it was snowing on my head;-) LOL! We can't wait to go back again!! We've decided that if anyone ever wants to get any one of us a gift for whatever occasion.....you can always get us a gift certificate to Kalahari;-) LOL!!! Seriously!! :)

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

Monday night: When we got home from Kalahari, we had just enough time to eat dinner and then go to my husbands indoor soccer game:) The kids had a blast watching him score a goal!! YEA!! They even got to go out onto the field at half time for the first time ever!! I have a feeling it won't be the last time!! Afterall, both their parents played soccer both indoor and outdoor most of their lives:)

As for an update on the kiddos...Lil' Chris is all done his Augmentin and is not complaining of any earaches and that little cough is all gone. YEA!! Ayla is still on her Augmentin. She didn't like the taste the first few days, but has gotten much better lately in taking the medicine. Her earache and little cough is gone too. YEA!! I'm still finishing up my Augmentin. I missed a couple of doses, so shame on me!! At least I remembered every time for the kids!! As you can see...my life revolves around them, not myself;-) LOL!!

Although, I did do something for myself and went to a chiropractor for my back since the massage the other day didn't work. They cracked me here and there and gave me an ice pack and directions to stretch it and ice it. The stretching and icing really does seem to help (esp after the first day at Kalahari...the wave pool really hurt;-) LOL! Oh yeah.....they also want to see me 3x a week for the next 2 weeks, then 2x a week the next 5 weeks, and then 1x a week for the next 5 weeks!! Ummmmm....I don't think so!! My insurance covers up to 20 visits, but my co-pay is $25 EACH time!! I may go a couple more times just so I can sit and get up out of a chair and bend over and not look like I'm 9 months pregnant! LOL! You can actually see me trying to bend over and pick Ayla up at the bottom of the slide in the video...it hurt so bad bending like that!

I actually have an appt with the chiropractor today at 4 and then a Great Strides meeting at 5:30. One of the other CF moms, Mary, is not able to help in the planning this year. We'll miss you Mary! So since my MIL lives here now, she has offered to help out with the walk!! YEA!Hopefully we can work together and raise LOTS of money for a CURE for Cystic Fibrosis!! You can get an early start and donate today, just click my Great Strides button under my header pic on the right hand side, and then "click to donate!!"

Have a GREAT week!!
M

25,000 Hits!! 3 out of 4 on Augmentin;-(

2011-01-20T11:05:00.001-05:00

My silly kiddos:)

WOW 25,000 hits!!! Thank you all so much for checking in on Lil' Chris every now and then!! I don't know what I would do without this blog sometimes. It's gotten me through some good and some bad times. Thank you all who have helped me out in some way:) I LOVE ALL your comments, esp advice from my fellow CF moms and dads and CFers;)

This blog is great for uploading pics and videos and also great for when I want to look back and see when Lil' Chris had a cough or cold last, and what antibiotic and such! That's what I mainly use this blog for anymore. It used to be more of a therapy blog for me, but lately it's been to keep a record of everything that is going on with Lil' Chris. For some of my older readers, you could probably tell;) Ever since I joined facebook, I've gotten a lot of new readers...family, old friends, co-workers, and such. I guess I used to be more comfortable spilling my guts and feelings back when it was just other CF mom readers who knew exactly what I was going through and what it was like.

That's ok though, I barely have time anymore and the time I do have, I want to spend it with Lil' Chris and Ayla. Also, my back has still been killing me and it hurts to sit at the table and type....yeah...I'm in pain right now;( LOL! I went to Sam Wanna spa yesterday and got a back massage hoping it would make my back feel better, but it didn't do the trick. It helped a little I thought, and then my hubby finally gave me a massage to help it too, but when I woke up today it seemed to hurt worse;( GREAT!!! Oh well. I guess it's time to go see a doctor. It all started from lifting heavy boxes of gift boxes at work in Nov and Dec. I guess I won't be doing that next year! I've learned my lesson....and it HURTS!!!

So anyways, Lil' Chris, Ayla, and I are all on Augmentin right now. Crazy isn't it?? Lil' Chris for his ear, Ayla b/c she has a little bit of fluid in her left ear and she was getting red spots on her body and she had a little dry cough, and me for a sore throat(which it wasn't even that sore and I wouldn't have taken it except I'm going to be around a baby soon;) I can't remember the last time I was on an antibiotic and got a throat culture!! I'm curious to see if I culture the same as Lil' Chris. lol

****************************************************************

Update: I just got the call that my throat culture IS the same as Lil' Chris' usual....Staphylococcus areus. They are going to call me back with the sensitive results, but Lil' Chris' is usually sensitive to Oxycillin (MRSA). We'll see I guess. They said that the Augmentin I'm on should do the trick since it usually works for Lil' Chris. I didn't know that we could share bacterias???? I thought only CFers could share, but I guess anybody can, it's just easier for CFers b/c their lungs are more sensitive.

****************************************************************
Hope you have a GREAT day!
M

PS. BTW, the spa day was sooooo relaxing and great!! I got a 1 hr massage, manicure, and spa pedicure!! Just what I needed!! Thanks Honey for that gift card from 2 Christmas' ago;-) LOL!! Thanks Oma and Opa for babysitting!

Ear Infection Update

2011-01-15T11:50:00.004-05:00

To update you...Lil' Chris' ear stopped hurting the next day, so I'm not sure if he really had an ear infection or not. This was his first one, but I didn't think one dose was going to cure it. Does anybody else know?? Does it really work that fast??

He hasn't been coughing that much either. If it really wasn't an ear infection, I'm kinda mad at myself for taking him and getting an antibiotic for him, b/c the more he's NOT on an antibiotic the better for him. Oh well. Now next time he gets a cough they will probably put him on something really gross and he won't want to take it;( Ughhhh

Everything else is good, he's been sleeping through the night and everything. Me on the other hand....I just wish I could get my back to stop hurting!!!!! It's been hurting for almost 2 months now and I know I just need a good back massage, but my hubby just laughs at me whenever I ask him for one;( Any takers???? :) lol
M

Lil' Chris' First Ear Infection;-(

2011-01-12T21:19:00.004-05:00

Last night was a rough night.

At 3:30 in the morning, Lil' Chris came into our room and woke me up, so I put him on the potty and put him back to bed, but he wanted his back rubbed and was acting a little weird. I rubbed his back and went back to bed, and about 30 minutes later he came back into our room, which is unusual. So I put him back into bed, but he started coughing a lot, so I stayed with him and started pounding on his back(CPT) like we used to when he was little(cupping my hand). He kept coughing, more of a dry cough than a wet cough, so I pulled out his old rubber percussor and started pounding on his back. I did that for a little, then I asked him if I could do his chest and sides and he actually said Yes. So I did his chest and sides, but he still was coughing. After a little bit, it got better, so I put him back in bed and then I went back to bed since I had to get up early in the morning.

About 15 minutes later, he came back into our room. This time my husband got up with him so that I could TRY to get some sleep before I had to get up at 6:30 for work. My husband said that he was complaining that his right ear hurt. I think he got up another time after I left for work saying his ear still hurt, so my husband sat on the couch with him for a little bit, then he asked to take a nap...this was probably about 8am;) So he went back to bed and I think got up around 10 or 10:30 when my MIL was there. She called me at work telling me that he was complaining that his ear hurt and that his right eye was a little red. This was the first that I had heard of the ear ache since I didn't get to talk to my hubby before I left for work.

I was a little concerned since he has never complained of an ear ache before, so on my lunch break I called the pediatrician to get advice and she wanted to see him today. So my wonderful boss let me leave work 1/2 hour early to get him there before they closed. She took one look in his right ear and said it's definitely red and that he has an ear infection. I was kinda taken back since this is the first time he has ever had an ear infection. I wasn't sure what to do, since Ayla never had one either. So I asked her lots of questions:) lol

Anyways, he is now on Augmentin for his ear infection for the next 10 days. She gave me a choice of 3 different antibiotics, but I chose Augmentin since I know he likes that one and it usually works for his coughs. He wasn't coughing much today, but maybe this Augmentin will help it not to develop into anything worse;) Hopefully tonight won't be another up and down night.

Please pray his ear infection, cough, and eye thing goes away really soon! The doctor didn't seem to think the red eye was anything. She also said that his lungs sounded clear, so that's a very good sign and a relief!

Thanks for all your prayers,
M

2010 Family Christmas Pics

2010-12-22T19:19:00.003-05:00

Here they are, our 2010 Family Christmas Pics....

I hope everyone has a VERY MERRY CHRISTMAS!!!!

3 1/2 year CF Clinic Visit 12/15/10

2010-12-20T23:50:00.000-05:00

So sorry it has taken me this long to update you on Lil' Chris' last CF clinic appointment 5 days ago. I have been so exhausted lately!! It's tough working retail full-time, taking care of the house chores, and being a full time mom (especially to a CF kiddo) this time of the year. I'm trying my best though.

His 3 month check up went well. His weight was 36.2 compared to 34.5 3 months ago. His height was 40 inches compared to 39 1/4 inches 3 months ago. His BMI was 55% which is good(not sure what it was last time). The clinic updated to be all electronic now, but the printout that we get at the end of the visit STILL doesn't show all the measurements and percentiles like I wish it would!! I still have to ASK what they are and then try to remember them. I may have to talk to someone about that;-) lol

His CF doctor said his lungs are clear and he is doing GREAT!! She said not to change a thing! Question....is it weird that she didn't ask one thing about his Vest?? Like...is he doing it??? LOL!! Maybe she just forgot;-) At least WE know that he is getting his Vest every morning and night for 30 minutes each:) LOL

She put in his (electronic;) file that we are giving him 500mg of Vitamin C and Coromega Omega 3 + Vitamin D every day. She didn't seem to object that we are giving him these, and they seem to be keeping colds away, so we are going to continue to give it to the kids, esp Lil' Chris. CysticLife posted this on Facebook and I thought it was interesting since the extra Vitamin D seems to be working so well for Lil' Chris...http://www.foodconsumer.org/newsite/Non-food/Drug/denufosol_helps_cystic_fibrosis_1912100916.html

2 cool things happened at clinic this time....1. Ayla wanted to wear a mask(you know...she DOES have to do EVERYTHING her brother does;) so I put one on her and she left it on!! I couldn't believe it!! She's becoming such a big girl! 2. The cool nurse let Ayla have a hospital bracelet too!! She was sooooo excited!! Sometimes she wants to be so much like her brother that she even asks to take pills before she eats and will once in awhile ask to do the Vest too:) lol! Poor kid doesn't realize how good she has it yet.

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

Lil' Chris got a throat culture, so please pray that it comes back normal. I'll let you know when I find out. I was telling the nurse that Nathan(my nephew with Leukemia) was planning on coming to visit us soon, but his counts are down right now...she said that it would definitely not be a good idea for Lil' Chris to be around him when his counts are down, especially with what Lil' Chris has cultured in the past. It's just too dangerous for Nathan. So please also pray that Nathan's counts go back up so that we can get together in the next couple of months.

I think that's it for now, I've got to go to bed and get up early for work tomorrow again...housework didn't get done AGAIN, but oh well, I really wanted to update you all on how his visit went:)

Thanks for all your prayers,

PS. Next update......Christmas pics!!! YEA!!!! MERRY CHRISTMAS!!

Let's All "Tackle CF"

2010-12-14T10:26:00.002-05:00

Hey Everyone, I got this really cool email about raising money for CF, so I thought I would share it with you so you can pass it along too so we can all help raise money for CF. I've shared this on Facebook once already, but here is a more extensive explanation....

Hi M,

My name is Seth Gonzales and I’m the coordinator of social media here at the Boomer Esiason Foundation.

My purpose in writing is first to introduce myself and extend to you an invitation to follow us on Facebook (www.facebook.com/boomeresiasonfoundation).

As a follower of your blog, I also wanted to make you aware of our brand new social media initiative that might be of interest to you, called “Tackle CF”. The Boomer Esiason Foundation is partnering with Samsung and Sears this month to help fight cystic fibrosis in a new way.

The idea is simple. For every one of these three social media actions taken, Samsung and Sears will donate $5 to BEF:

1) Twitter - tweet using #tacklecf
2) Facebook - share the Tackle CF clipboard with your FB friends (found on the Tackle CF website)
3) FourSquare - check in at any Sears or Samsung store

If any one of these social media actions are taken, Samsung and Sears will donate. The goal is $150,000. Even better, you can tweet, share on Facebook, or check-in on Foursquare as many times as you'd like. The program started earlier this month. As of now, we're near the $50,000 mark, but we need your help to reach our goal of $150,000.

If you would like to post about this, I can answer any additional questions you may have. Any help we get in spreading the word within the social media sphere would be greatly appreciated.

This is something very new we're trying with Samsung and Sears that's been a long time in the making. We're hoping for a great start to 2011 by reaching our goal.

Again, if you have any questions, my contact information is below

I appreciate your help!

Seth Gonzales
Social Media Coordinator & Rimington Trophy Media Relations
Boomer Esiason Foundation
483 10th Avenue, Ste. 300
New York, NY 10018

Office: 646-292-7946

Fax: 646-292-7945

WWW.TACKLECF.COM
The easiest way to help us in the fight against CF.

facebook.com/sethbef

www.esiason.org

Facebook Causes:
Boomer Esiason Foundation
Team Boomer

Facebook Community Pages
Boomer Esiason Foundation
Rimington Trophy
Team Boomer

TEXT: BOOMER
TO: 90999
Donate $5 to the Boomer Esiason Foundation

Santa Pics / Cookies / Snow / CF Update

2010-12-13T12:55:00.000-05:00

Lil' Chris(3 1/2) and Ayla(23 months) getting their pic with Santa:)
Lil' Chris telling Santa what he wants for Christmas:)

My lil' Mrs. Clause;)

They are getting so big!!

Lil' Chris giving Ayla a hug:)

The other day I took the kids to get their pic with Santa at Walmart for free!! They did a really good job (even though you could tell they were a lil' scared;) NO TEARS!! YEA!! Lil' Chris actually told Santa what he wanted for Christmas!! I was SHOCKED!! I didn't think he would say anything....I felt like I was watching "A Christmas Story" when Santa asked him what he wanted for Christmas and there was that long pause.....then finally he said "A Robot!!" They had a whole bunch of the Alphie the Robot a few feet away, so he even pointed to it and showed Santa when he got off of his lap!! Too cute!! I was SOOOOO proud of him:)

Everybody kept saying how cute Ayla was in her Mrs. Clause outfit:) While we were walking around Walmart after their pics, all I kept hearing was "Awwww! Look how cute!!" It was so funny! A stranger even snapped a pic of her with his cell phone!! A lil' creepy, but I'll take it as a compliment for having such a cute kid;-) LOL!

When we got home, they took their naps(Lil' Chris woke up dry again:) so we made Christmas cookies!! They had lots of fun!! Afterwards they decorated them with these cool decorating markers!! They had a blast!!

Cool roller with different cutouts on it...

Decorating them with markers....

Finished product:)...(they tasted pretty good;)
This morning Lil' Chris was doing his Vest, but still wanted to watch Daddy get the snow blower out of the shed:)....

As for a CF Update....Lil' Chris was complaining of a sore throat all day yesterday and then threw up twice in the middle of the night. The first thing he said today, was that he feels better:) He said his throat doesn't hurt anymore. YEA!! Praise the Lord!! I just hope it stays away!

Thanks for all your prayers and keep them coming that we all have a healthy winter,