CF Clinic Visit / New Acapella / 2nd PFT

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

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

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

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

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

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

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

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

Mommy's Milestone / New Challenge

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

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

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

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

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

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

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

1st School Pic!!!

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Lil' Chris' 1st Field Trip!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wadsworth United Methodist Church

195 Broad Street

Wadsworth, Ohio

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

Keep Praying for Chaia / Lil' Chris Update

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

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

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

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

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

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

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

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