CF Update / Ice Skating Video / Ayla potty training update

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!!!

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

My Ayla Bella:)....

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

Our annual family pics:)...

My BIG boy...

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

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

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

CF Update / 1st Christmas Musical

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

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

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

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



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

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

CF Links / Colds / Coughs / Christmas decor :)

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

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

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


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

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

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

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

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

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

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

CF Clinic Visit / New Acapella / 2nd PFT

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

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

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

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

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

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

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

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

Mommy's Milestone / New Challenge

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

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

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

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

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

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

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

1st School Pic!!!

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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