Vest Bear Arrived!!!! Woo Hoo!!!

BIG THANK YOU TO TRACI LIBERTO, a fellow CF mom, who told me about a cool Vest Bear Buddy that Hill Rom Vest company was giving out to lil' CFers!!! All I had to do was call Hill Rom and ask for one and they were on back order when I called, but we just received it the other day!!! WOOHOO!! 

Lil' Chris LOVES it, even though he won't admit it all the time!!! It wears a Vest just like him!!! AND you can even pump it up and inflate it's Vest!!! It's pretty cool! It has velcro straps just like Lil' Chris' Vest too!!! Somebody was pretty smart when they invented this bear to help lil' ones to do their Vest treatments:) The best part is that it fits on all bears or stuffed animals or dolls that size!!! Ayla likes it on her bear :)


I asked Lil' Chris what he wanted to name the bear and he said "Chris!" I wonder why?!? :) My guess is b/c he can relate to it :(


Enjoy the video of him putting his Vest on and the bears Vest on and then doing the Vest treatment together and then taking the Vests off together. At the end is a lil' glimpse of when he doesn't want to do his Vest sometimes. He's usually pretty good about it, but he does have his moments!! It's just heartbreaking, but Mommy can't give in, b/c it's important for him to stay as healthy as possible!!! WE NEED A CURE NOW!!! Please take 2 minutes and donate today, just click the "great strides" link on the top right of this blog. Our walk is only 2 weeks from today!!!! YEA!!!

Make a video - it's fun, easy and free!
www.onetruemedia.com

M

PS. Preschool Graduation pics coming soon! :) DON'T FORGET TO JOIN US THIS TUES MAY 29TH BETWEEN 5-8P AT THE WOOSTER CICI'S PIZZA FOR A CURE 4 LIL' CHRIS AND ALL WHO SUFFER FROM CF!! RAFFLE IS FOR 2 TICKETS TO AN INDIANS GAME OF YOUR CHOICE!! SEE YOU THERE!!!

Annual CF Clinic Visit / CiCi's CF Fundraiser Results

Lil' Chris had his annual CF clinic visit on May 16th and he had a GREAT report! Lungs are CLEAR!! YEA!! For those who don't know, CFers go to a special CF clinic, usually at a Children's Hospital, every 3 months for a checkup. Then every year around their birthday, they have their annual visit, which is when they go over EVERYTHING!!! These visits usually are 2-4 hours long;( We have to prep for this visit by getting x-rays and blood work done beforehand. They said that his blood work looked GREAT!! The Dr. also said his x-rays looked GREAT too!! They aren't 100% clear in the pics below, but she said she didn't see any scarring yet! BIG YEA!!!!! Here are the pics from the past 5 years, one year was missed, not sure how that happened??....

5/21/08

6/16/10

3/16/11

4/4/12 First time standing up while taking x-ray

Click here to go to the post where he got his last x-rays taken standing up.

His weight went up from 41.2 to 43.8 and his height did too a little from 44.5 to 45 inches. His weight was in the 74th percentile(up from 66th last time, 3 months ago) and his height the 90th percentile(down a little from 92) and his BMI the 40th percentile(up from 20th percentile last time:) The doctors like CFers to be at the 50th percentile or higher for BMI, so this big jump is so nice to see!!!

The doctors made no changes to his meds, but they suggested we up his pressure to 5 instead of 4 on his vest for the first 20 minutes of his 30 minute treatment. We changed the setting on our Vest and he is handling it fine:)

Now that he is almost 5, every clinic visit(every 3 months) he will have to do a PFT(Pulmonary Function Test) which they will keep track of. Up until now, he has been practicing for it, but now they will keep it on record. Most kids can't even do it at age 4, they always are impressed with him:) He did a GREAT job and scored a 99 for his FEV and a 93 for his FEV1! Pretty good, but we want 100%!!! :) Next time...next time! You'll see in the video that he got one good one in the beginning, but he got tired after that. He's still learning. What he has to do is take a really deep breath and then blow out as hard and as long as he can. He's getting there:)

Make a video - it's fun, easy and free!
www.onetruemedia.com

He got a throat culture taken too. He impresses me every time when he doesn't cry or anything!!! I guess he is used to getting it done every 3 months now. It surprises me that he doesn't say things like, "I don't want to go to clinic, they will try to shove a thing down my throat!" He never complains, even though he knows it's coming! He just takes it like a man! :) That's my boy!!! I will let you know when I get the results from it. He didn't have a cough going into this visit, so I'm not expecting any bad bacterias, but you just never know with Cystic Fibrosis. That last antibiotic finally kicked out that wet cough he was having for what seemed like months! He coughs every now and then, but it's dry, so I'm not worried about it. I'm so glad that I pushed to get him on that antibiotic, b/c they fought me on it saying it was just allergies. Please pray the results come back clear or no new bad bacterias!!

So the doctor never ended up having him try the Pulmozyme for the first time in the doctors office like I was told. I guess that was just if we went with HTS instead of Pulmozyme, b/c some kids have reactions to HTS. My husband wanted to know if we could start it after vacation, and the dr saw no problem with that since it's only another month. I was kinda excited about getting started and going on vaca for the first time with it, but I guess it will be easier without it and that will make this our last vacation with no breathing treatments. Makes me sad when I think about it, but this Pulmozyme will be good for him. We want his lungs to be as healthy as they can be for when that CURE comes!!! Studies have shown fewer hospitalizations, lung infections, coughs, and antibiotics with the daily use of Pulmozyme, so I am ALL for that!!! I will post pics and videos when we do start it though:)

After our clinic visit, I had a CF fundraiser at CiCi's Pizza! BIG THANK YOU to my fellow Kohl's associates for helping out so that Kohl's would give a $500 grant!!

THANK YOU...

Jill P.

Kathleen S.

Jill S.

Laura T.

You girls are the BEST!!!

I was raffling off 2 tickets to an Indians game and we raised $170!!! Woot Woot!! Our winner of the raffle was our good supportive friends from church, Stephanie and Clay!!!! THANK YOU GUYS SO MUCH FOR YOUR AWESOME DONATION AND FOR COMING OUT TO SUPPORT US!!! They have also signed up to walk with us on June 9th at our Great Strides walk!! Stephanie has been posting her Great Strides page on Facebook and everything to help raise money!! We can't thank you enough Steph!! You'll be surprised as to how many friends and family will donate when you tell them about Lil' Chris!! Small amounts from each one adds up to a lot!!

So our total for the night including the raffle, the Kohl's grant, and the percentage from all the customers receipts was around $730!!! WOO HOO!!!! THAT'S AWESOME!! Special thanks to our neighbors Tiffany and Ryan and their kids for coming, and also Lil' Chris' teacher Ms. Carrie and her husband Justin for coming!! Thank you all for coming to support Lil' Chris and for your generous donations for A Cure 4 Lil' Chris and ALL who suffer from Cystic Fibrosis!! 

BIG thank you to everyone who donated that night at CiCi's!! Cystic Fibrosis is not funded by the government, so these fundraisers that us CF parents do are soooo important in finding that CURE!!!

My next CF Fundraiser will be at the Wooster CiCi's Pizza again on Tues May 29th from 5p-8p!! Raffle will be 2 tickets to an Indians game of your choice!!!

ALL are invited and please help me spread the word, either my word of mouth or by Facebook!!

Thanks again for everything!! Keep the prayers coming!!

M

PS. Garage Sale/CF Bake Sale Results coming soon:)

"Change for CF" Results and Party

Today Lil' Chris' preschool had a pizza party for all the money they raised for A Cure 4 Lil' Chris and all who suffer from Cystic Fibrosis! It was an honor to join them in their pizza party and watch his friends celebrate in raising $173.57 to help find a CURE for CF!!! I loved watching Lil' Chris give his goody bags to his friends too as a thank you:) Ayla had fun at the party, she just joined right in:) LOL

Being protective of his lil' sis who joined their line:)

Being silly picking up Ayla

Pizza Party Time!!

He's the one who needs the calories the most, and he ate the least amount of pizza out of all the kids! LOL

He did eat his pretzels though :)

WOW!! LOOK AT ALL THAT CHANGE FOR CF!!! The kids did a GREAT JOB raising so much money for CF!!

Group pic with all the change that they raised!!

Goody bag for the kids as a THANK YOU!!

Lil' Chris passing out the goody bags to his friends:)

Ms. Carrie made this and sent it to all the kids to start the fundraising:) She did a GREAT JOB!! I love the pic of Lil' Chris! It's neat to see how much he has grown since the beginning of the school year:)

She also sent this home with the kids to get them to come to our walk on June 9th at 9am behind Ida Sue School!! One parent told me today that she signed up to be a team leader in honor of her friend in PA who has CF! What a GREAT way to support her friend and Lil' Chris!!

 

WE LOVE YOU MS. CARRIE!!!

 BIG THANK YOU to Ms. Carrie for setting up the "Change for CF" fundraiser and for inviting them to our walk, and BIG THANK YOU to ALL Lil' Chris' Preschool friends for bringing in change for CF!! We appreciate it soooo much!!! THANK YOU!!!!
M
PS. Lil' Chris has been doing great, no cough!! YEA!!! CF Clinic visit update coming soon!

BEST Support Team EVER!!! THANK YOU ALL!!

I've got some HUGE THANK YOU'S for some VERY special friends & family for all their support! This year has been very hard for me fundraising wise. I normally have 5 or so events/fundraisers done by May, but I only have 1 done. I just can't seem to get motivated this year for some reason! 

I don't know why, maybe it's just starting to hit me harder that my son's health is not going to get any better as he gets older...it's only gonna get worse. In just this past year alone, he has started an inhaler, the acapella, newer/stronger antibiotics, and will be starting his first DAILY nebulizer called Pulmozyme in less than 2 weeks. 

It's hard and takes a lot out of me to do a fundraiser and talk about "my son with a fatal disease called Cystic Fibrosis" for 3 hours straight, it's hard to sit down at the computer for hours trying to come up with the right words to practically "beg" your friends and family to donate so your son can have a longer more normal life, it's hard trying to raise awareness about a disease you despise more than anything in the world! 

CF is not something I want to think about on a daily basis. Sometimes I just want to pretend he doesn't have it and just live a normal life and spend every waking moment with him while I have him, but NO...I CAN'T. Keeping quiet about CF is NOT going to help my son live longer, it's NOT going to help him breathe easier, it's NOT going to help him live a more "normal" life. 

Going outside of my comfort zone by speaking up, writing emails, practically begging people for money, putting together a Great Strides Walk and raising money IS!! The following friends and family have inspired me and encouraged me to do more and NOT give up!! They know how important it is to raise the MUCH needed money for a CURE! Lil' Chris NEEDS me to do all these things I hate...his life depends on it.

So without further ado, my HUGE THANK YOU'S go to...

1. to my sister, D, and her family for raising $600 and walking for "A Cure 4 Lil' Chris" today at the Great Strides Walk in NC!! YOU GUYS ARE THE BEST!!! Thank You to the Jarvis Family for walking too:)

2. to my sis-in-law and family for donating and walking in NJ for "A Cure 4 Lil' Chris" and for braving the freezing cold weather:) THANK YOU ALL SO MUCH!!!

3. to our friend Kevin for getting his work, Preferred Wireless, to be our "Kick-off Sponsor" of $300 AND they are donating tons more for the walk, like lil' baggies to hand out and such. 

4. to our friend Deb for getting our "K-Marker Sponsor" of $250 who's company wants to remain anonymous...I think that's pretty cool...a company donating so much and not wanting any publicity for it!! :)

4. to Lil' Chris' teacher, Ms. Carrie, and all his classmates for doing "Change for CF" til the end of the school year!! They are bringing in change every day and I even saw some dollars in there too!! I can't believe their jar is almost full!!! Way to go kiddos!!! This will definitely "Change" CF forever!! ;)

5. to my friend Jeanette for getting her work, Wayne Savings Bank, to be our "Single Rose Sponsor" of $125!!

6. to our neighbors and friends who have come to us asking how they can help and for brochures to try to raise some money for CF...Sean & Michelle, John & Andrea, Melissa B., Carrie G., and Stephanie W at our church for helping get a team going there!! You guys are all the BEST!!! Your effort and interest means soooo much!!

7. to Stacie A at work who offered her support in any way and would love to go to my fundraisers and our walk, but can't b/c she has the sister disease to CF called Bronchiectasis. She has all the lung problems, but not the digestive problems like CFers.

8. to our neighbors who will be participating in our annual CF Bake Sale next Sat May 12th 8a-3p at our Community Garage Sale!! THANK YOU EVERYONE IN ADVANCE!! 

BEST part about all these amazing people, is that they did it all before I could even ask!! Isn't that AWESOME!! THANK YOU GUYS SOOOOO MUCH!!!

Lastly, I want to say a BIG THANK YOU to all those who have donated these past almost 5 years!! It saddens me to think about what Lil' Chris and all his CF buddies health would be like if myself and other CF parents didn't bug all our friends and family for donations. It's because of you guys that Lil' Chris is well and able to go to Kindergarten this year! 50 years ago, CF children didn't even live long enough to attend Kindergarten, so Lil' Chris going to Kindergarten this year is a BIG deal and YOU are all a part of that!!! Thank You All!!!

 

I can't thank you all enough for your dedication, love, and support!! It means the WORLD to us!!! 

THANK YOU, 

THANK YOU, 

THANK YOU!!!!!!

M

PS. If you haven't donated and would like to, click the Great Strides link under my header picture at the top of my blog to the right. If you would like a sample letter to send out to YOUR friends and family to help raise awareness and money, email me or leave a comment and I will send it to you. Thanks so much!

Cystic Fibrosis Movie Tonight at 9p on OWN Channel

Making its U.S. premiere tonight, the powerful documentary "65 Red Roses". Showing tonight at 9pm EST on the OWN: Oprah Winfrey Network. If you want to learn what it's like having Cystic Fibrosis when your in your 20's, you gotta watch this movie tonight!! I remember following her blog and I couldn't wait til it premiered in the US!! Now it's here!!

Click here for a sneak peak of this awesome documentary about Cystic Fibrosis and the importance of organ donation!

 She first got her fame by her blog about CF, then I remember watching her being interviewed on talk shows, and then she made this movie to raise awareness of CF!! She was a busy girl, but I admired her for all that she did for CF!! 

 I don't know if you remember when I posted her "Farewell" video, but it was heart wrenching. Click here for that post.

It's gonna be super sad for me to watch this movie knowing that she didn't make it after waiting for a SECOND double lung transplant, AND knowing that this MAY be my son in 20 years. I'm really hoping and praying that with the advancements in medicine recently, that this won't happen to Lil' Chris or his CF buddies. It's also the reason I raise money for a CURE!! Thank you all who have donated over the past 5 years!! EVERY penny means SOOOOOO much!!! After you watch this movie, you'll see why.

If your not already an organ donor...WHAT ARE YOU WAITING FOR??? You could literally save 7 people from dying and help tons more live easier!! Click here to register to become an organ donor today! If you don't do it now, next time you renew your license and they ask if you want to be an organ donor....PLEASE SAY YES!!! You could help save my son's or a fellow CFers life someday!! Spread the word!!

Thanks for the continued prayers and for watching this movie. Don't worry if you miss the 9p showing, there is an encore showing right afterwards and then it will show again on Saturday. Let me know what you think!

M

PS. Guess who learned how to ride his bike without training wheels on today?!?!? That's my boy! Riding his bike will be so good for his lungs! :)

ANOTHER COUGH?!? / Kalydeco Helping 20% of CF Population?!?

Sooooo I never should've posted yesterday about his cough being gone 100%, b/c guess what he started today?!? Yup! Another cough! Not sure if he got it from Ayla or not, but this just STINKS!! He's not coughing all the time, but when he does it sounds wet already;( UGHHHHHH!! 

May 16th can't come soon enough!! I'm tempted to call the CF clinic to see if he can start the Pulmozyme now since we have the machine and the medicine now, which btw took me over a MONTH to get!!! I know they wanted to do his first treatment at the clinic, but these coughs are dangerous for his sensitive lil' lungs. I know the Pulmozyme won't take away his cough, but I'm hoping it will help decrease his coughs so he won't get them so frequently. 

The more coughs he gets, the more antibiotics he gets, which means the sooner he will become resistant to those antibiotics, and then what??? I don't want to think about that! So if this Pulmozyme can help decrease those coughs, then he will need less antibiotics, and then when he really needs an antibiotic, he won't already be resistant to it!! Make sense??

We have to try to do all we can to keep his lungs stay as healthy as possible until the miracle drug is ready for him!! I just KNOW it's coming soon for him!! There are so many promising stories about the new drug Kalydeco!! My CF buddy, Ronnie, posted this yesterday about "Kalydeco-Can it Benefit Others?" (click that link) It's very interesting how he talks about Kalydeco, which we were all to believe originally that it was only for 4% of CFers, but now may be able to help 16-20% of the CF population!! That's FANTASTIC NEWS!! Although Lil' Chris still isn't part of that 20%, b/c his CF gene type is different(double delta F508), it still gives us GREAT HOPE that a CURE is coming soon!!! WOO HOO!!!! Thanks Ronnie for sharing!!

Donating now is so much more important than ever, b/c we are sooooo close to finding a CURE, but it takes millions of dollars to get these drugs rolling!! It's so easy to donate and don't forget...it's 100% tax deductible!! Click the following link to donate today and help find a CURE for Lil' Chris and all his CF buddies! Trust me, you'll feel good about yourself afterwards knowing you helped save so many young lives...

 http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks in advance,

M

PS. I'll send you a cute thank you card with Lil' Chris' pic on it after you donate!!! Just a lil' incentive;-) lol

Our Decision on Pulmozyme or HTS / CF Update

Hmmmm, I went to go blog today and it's all different!! They changed it on me! You should still see the same, but I think just the way to write on the blog is different now. Not sure if I like it, but I'll get used to it hopefully;-)


Anyway....Big news!!!!!

PULMOZYME IS IN THE HOUSE!!!!

 Shipped in this cooler/box on ice ice baby ;) lol

 The kids had lots of fun playing with the bubble wrap and dragging each other with the long one:) lol

These are REALLY loud when they step on them and pop them!!

So sad:'( I HATE that he's going to have to take this for the rest of his life, but if it helps him, it will all be well worth it!!! He will start this nebulized drug on May 16th which is his next CF clinic appt. Please pray he takes to it well and that it works for him, b/c if it doesn't then we'll have to try the Hypertonic Saline(HTS). Thru my research, I found both good and bad things about each Polmozyme and HTS. What it seemed to boil down to was that it just depends on the CFer. What might work great for one CFer might not work so well for another CFer. It was a Big decision to choose which one, but we are praying that we made the right decision and this Pulmozyme works miracles for him!

Below is the nubulizer machine. It's the MoblAire 150psi by Invacare, which I was told is the Best of the Best!! I don't have anything to compare it to since this is the first nebulizer Lil' Chris has had...so we'll take their word for it;-)

In other Big news.....Lil' Chris has reached over  

TWELVE HUNDRED HOURS

  on the Vest!!! And he mostly sits pretty good thru it, esp since we got the iPad2;) Thank You Kohl's!! :)
As for a CF Update on Lil' Chris...he is doing VERY well!! That last antibiotic finally kicked in and his cough went away!! PRAISE THE LORD!! Our 7 step treatment 3x a day plan worked!! YEA!! Thank you all soooo much for all your prayers! It's soooooo nice not hearing him have a wet cough anymore!! It's seems like it's been way too long since he has gone 100% without a wet cough! I am one happy momma...except Ayla has had a runny nose and a cough for the past week. I think it's just allergies, but I'm REALLY hoping and praying that Lil' Chris doesn't pick up her cough. I'm so glad that she has learned that it's important not to get Lil' Chris sick. She always makes sure she covers her mouth when she coughs, and she tells Lil' Chris when he wants to get close and play, "I don't want to get you siiiiiiiiick!" :)

Again, thanks for your continued prayers,
M

Annual Chest X-rays and Blood work-almost 5 yrs old

I talked to the CF clinic and we are extending his 5 days to 8 or 9 days of this Azithromycin to finish up the bottle since he still coughs every now and then. It's better, but not gone. They said after an oral antibiotic it should be completely gone, esp since we are going above and beyond with my 7 step treatment plan(check last post;)

Yesterday we took Lil' Chris to the CF clinic to get his annual chest x-ray and blood work done. He did such a GREAT JOB!! He was a little afraid of the needle...he was breathing heavy once he sat on my lap in the chair, but still did great!! After we got the x-rays, I asked if we could get a cd of all his x-rays of the past 4 years and they did it!!! I'll try to figure out how to put them on here if I can. They don't look much different from his first x-ray when he was one, but they aren't very clear either, so not sure what to think. I can't wait til our May 16th appt to ask the dr. I'm going to ask to see the x-ray there so she can go over it with us. They have never done that before, not sure why. I guess I'm gonna have to ask for everything;-) lol

Well, if I'm not on here before Easter, I hope you all have a very happy Easter!! :)
M

Cough Update / 7 Step Treatment 3 times a day to get rid of it hopefully

Well, only a couple days left of his antibiotic and he is STILL COUGHING!!!! AHHHHHHH!!!! So frustrating.

I heard that Azythomycin stays in the system for 10 days even though he is only taking it for 5 days, so I guess we'll wait and see???? I'll prob call the CF Clinic in a few days if his cough isn't gone by then.

The next few pics are of Lil' Chris doing his Albuterol puffer before his 2nd Vest time today and his Acapella after Vest to try to get rid of this nasty cough.
With chamber...
Without chamber...(he likes to do it this way better, and he is pretty good at it too!:)
Holding it in....
I just love his look in this pic;-) LOL
Blooooooooooooooooow!!!
This was him at the end of his treatments after doing...(I may add this pic to the CF commercial;)...

1. 1 Albuterol puff with chamber and taking 10 deep breaths, wait one minute
   
2. then one Albuterol puff without chamber and holding it in
3. then Vest for 30 minutes
4. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
5. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
6. then 5 breaths on Acapella, 2 huff coughs, then a big deep cough
7. Then I encourage him to cough it up and spit it out if he can. Today he actually got some up and spit out!! I was so proud of him! I told him he will get a treat every time he does it, hopefully this will encourage him to cough it out more often:)
   

He's been doing these 7 steps morning, noon, and night along with some manual CPT as well(when I'm with him;). Poor thing. I pray it does the trick!

Cystic Fibrosis STINKS, literally sometimes, but overall...it just plain STINKS!!! We need a CURE ASAP!!! It seems like Lil' Chris' CF buddies are having a hard time too lately. Jack & Alli(brother and sister), and Kendall have cultured at least one of the 2 bad bacterias called MRSA and Pseudomonas. Not good. Please keep them in your prayers, and as always keep Phennyman in your prayers too. It's so hard seeing these kids suffer at such young ages.

Thank you soooo much to those who have donated so far!! It means the world to all us CF families!!

Here is the CF commercial my hubby made for the Canton Walk that will play in Massillon. It's the same as the Wooster one, but the walk info is different. We are going to try to get the dates taken off the bottom corners before we send it in;-) lol

If you haven't donated yet and would like to, go to http://www.cff.org/Great_Strides/LilChrisChris6765 and click to donate today! It only takes a minute! If you would rather not pay by credit or debit, you can send me check made out to the Cystic Fibrosis Foundation. If you need my address, just email me, my email address is to the right of the blog.

Thanks everyone for your much needed prayers and keep them coming!!
M

Azithromycin / CF Commercial for 2012

Lil' Chris has still been coughing, but not as much. When he does cough though, it is pretty wet and nasty sounding. He has been up in the middle of the night coughing some too. We've(or at least when I am home;) been doing Vest 3 times a day(30min each time), and Albuterol before Vest, and Acapella after Vest, and some manual CPT. All this didn't seem to be helping.

So I played phone tag with the CF clinic for a couple of days, then finally got to talk to Nurse P and she thought he didn't need an antibiotic. She thought it was just allergies b/c they have been getting lots of calls about allergies b/c of all the pollen and crazy weather lately. Once she realized I was not convinced, she gave the dr. a call and long story short....we went back and forth a couple more times and he is now on an antibiotic he has never taken before called Azithromycin. He is to take 5ml the first day(yesterday) and then 2.5ml for the next 4 days. Weird that it's only 5 days, but we'll give it a whirl I guess. Nurse P didn't say much about it, so I may have to do some research on my own. I'm praying it makes his cough go away for good!!! Thank you everyone for your prayers and please keep them coming!


Above is the CF commercial my hubby and I made for our CF walk. He used the voice from an old CF commercial. We tried to get the pictures that were on that old commercial too, but couldn't figure it out, so we used pics of Lil' Chris, Jack, and Kendall. They all have Cystic Fibrosis and live near us. Us parents are all friends on facebook which makes it so nice and quick to get advice from each other:) LOVE our CF Community!!! :)

It will be played in any open spot from April to June 9th (the day of our walk) in Wooster on Clear Picture, Inc! We also made one for the Canton walk with all the same pics and words, just changed the walk site at the end. This one will play in Massillon on Massillon Cable TV, Inc. CLEAR PICTURE and Massillon Cable TV ROCKS!!! They are so AWESOME to sponsor us by playing our commercial every year for free!!!

You all have my bro-in-law to thank for this blog! He is the one who created this domain and renews it each March! Thanks Steve!! You're the BEST!!! I can't believe I've been blogging for FOUR YEARS!!! Wow, time sure flies by!! :) I can't believe there have been almost 35,000 hits too!!! UNBELIEVABLE!!!

THANK YOU ALL SO MUCH FOR SUPPORTING LIL' CHRIS IS HIS JOURNEY AND FOR ALL YOUR PRAYERS!!! :)
(((((((HUGS))))))) to you ALL!!! :)
M
PS. Let me know what you think of the commercial:)

Cough and Cold Update

So I'm pretty sure Lil' Chris got a cold and it's not just allergies, b/c Ayla got it and now me...ughhhhh! Although, it doesn't seem like a bad cold thankfully! He still has LOTS of energy!! :) Ayla and I have runny noses, but Ayla has a lil' dry cough;(

2 min after my last post, Lil' Chris was doing his vest and coughing so much that as I went to go get his albuterol, he started throwing up. And of course all over his vest! Thank God it is machine washable now! Poor kid. At least we know the Vest does it's job...helps get the mucus up and out, even if it isn't very pleasant sometimes. Last night when we were praying, he prayed that God would take his CF away:'( Thanks again everyone who has donated for a cure! It's times like these that we appreciate it the most!!

This morning when he woke up, he kept coughing the whole time thru breakfast and when it finally calmed down, he said "Mom, my cereal is too old to eat now!" Meaning it was all soggy:) LOL Unfortunately, the albuterol puffer didn't do much for his cough. We did Albuterol before Vest time and Acapella afterwards each time today, which equals 3 times...1 1/2 hours!!!

I'm hoping he isn't coughing too much in the morning. Its usually worse in the morning from laying down all night, I think. Hopefully his nose won't be stuffy anymore either.

Please pray he gets better real quick before any bad bacterias settle into his lungs. I'll be calling the CF clinic tomorrow. Not sure what antibiotic they will put him on since it seems like he just got done an antibiotic!

We almost have our CF commercial done!! YEA!! I'll post it when it's done!! Soon we will be making our personalized thank you cards and sending them out to all who have donated this year so far:) We are currently at $1,225!! Thank you so much everyone!!

If you haven't donated yet and would like to, just click here!! We appreciate EVERY dollar raised!!! BIG THANK YOU TO MY GRAM AND MY AUNT CAROLYN FOR YOUR DONATION!! I received your checks in the mail the other day:) You guys are the BEST!!!

I'll be setting up some fundraisers soon. I'm so behind this year and am finding it hard to get motivated for some reason. Each year seems to get harder and harder. Not just all the work that goes into it, but the emotional side as well. It's more important now than ever before though, b/c I believe we are getting closer and closer to a CURE!! :)

Thanks for all your prayers and donations,
M

CF and Cough Update / Ayla 1st Time Sneaking Downstairs :)

We kept Lil' Chris home from Preschool today, b/c his nose has been runny and he has been sneezing a lot....oh and of course his cough got worse...argggggg!!!! Not sure if it's allergies or a cold yet. He did have a sore throat after school on Wed though. Please pray his cough doesn't get worse and he doesn't get any scarring or bad bacterias in his lungs. We are going to get his chest x-rays done next month, so we will see if they are still clear or not.

On a good note, Ayla has been getting out of her bed all by herself now!! YEA!!! She doesn't call us anymore to get her out!! WOOHOO!! Only bad thing is....in the morning she freaks me out by just standing next to my bed starring at me til I open my eyes!! Too funny!! Her brother used to do the same thing and still does sometimes:) LOL

At nap time she comes down all by herself too:) Above is the first time she came down by herself and peeked over the ledge, just like her brother used to and still does sometimes:) Click here to see the post of Lil' Chris' first time peeking;)
M
PS. I'm going to see Hunger Games tomorrow WOOHOO!!!! Can't wait!!! :)

CF Update / CF Lungs vs Healthy Lungs

Just a quick update on Lil' Chris...He finished his 3 weeks of antibiotic, Bactrim, a few weeks ago and for the first couple of days his cough was gone! I was soooo excited!! Then he went back to school and came back home with a cough again;( Ughhhhhhh It was sounding wet, but now it seems to be getting better :) PRAISE THE LORD!!! I'm praying for no more coughs before his next CF clinic appt in May.

I called the CF clinic the other day about getting the nebulizer machine for the Pulmozyme or HTS(we still have not agreed on which one to do). We are going to start it after his next CF clinic appt so they can show us how to use it and clean it properly. They said that some have reactions to it, so they like to do the first treatment at the clinic....which is more than fine with me since I have never used one before. Growing up, me and my sisters were pretty healthy, and the only sicknesses that I can remember were strep throat and my sister had to get tubes in her ears....that's it, other than the common colds!!! Thank You Lord!!!

I know these nebs won't make his cough go away or make him never get another cough again....but it will hopefully help him cough up the mucus and get it out rather than staying in his lungs for more bad bacterias to latch onto it causing more problems. I just pray that he doesn't get any scarring in his lungs before we get a chance to start it. Hopefully this new nebulized med will help keep scarring at bay. If we can keep his lungs clear until a CURE is found...then we are golden! If not, then the scarring and irreversible lung damage will stay with him and affect him even if.....I'm sorry.....WHEN a CURE is found!!!

Here is a pic of a CF kids lungs with irreversible lung damage...you can see how cloudy it looks, that's scarring.
Here is a pic of healthy lungs that are clear...
We are so close to a CURE and we can't let Lil' Chris' lungs get like that first pic! We need that CURE NOW before it's too late!! That's why it's soooo important to donate today to help save not only Lil' Chris' lungs, but all 30,000 in the US and 70,000 children and young adults worldwide!! Click here to donate today!!

Thanks so much to all who have already donated!!! It means the world to us!!!
M

Ayla's 3rd Birthday Pics and Video & Lil' Chris' old 3rd Birthday Video :)

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I can't believe my baby girl is 3 years old already!!! She is getting so tall just like her big brother:) Check out the video above of her 3rd birthday...She picked out the song ;)

For her birthday, the 4 of us went to Disney World at the end of January!!! We had sooo much fun!! It was their 2nd time going! More pics to come:) Minnie is her fav:)

Things she's doing now...

We started potty training her the first week of January and my goal was to have her ALL potty trained by her birthday 1/29...I'm proud to say she did it, and is 100% potty trained!!!! She didn't even wear any pull-ups in the long car ride to Disney!! She has had only one accident since before her birthday and that happened just the other day. She has been daytime potty trained since March of 2011 when she was 2, but now it is sooooo nice that she is potty trained at night time too!!! I know she could've done it earlier, but I guess my husband and I were just being lazy and didn't feel like changing sheets in the middle of the night yet;-) LOL! In the beginning of potty training, she would call for us at least once in the middle of the night to go potty, but for the past month or so, she has been holding it ALL night like her big brother!!! Sooooo proud of her!!! And I'M soooo happy to not have to get up in the middle of the night anymore;-) LOL

We changed her crib into a toddler bed once she turned 3, just like we did with Lil' Chris when he turned 3. She liked it at first, but then when it was bedtime, I think she missed being the baby;) She wanted us to pick her up and put her in just like when it was a crib. She also has not gotten out by herself in the morning either. She will stand up and call for us, just like she used to in the crib. This is kinda good and bad...good b/c she never gets up a million times like her brother does, bad b/c she's trying to act like a baby still, and also bad b/c then WE have to get up and go get her. That was the big reason I wanted to change the bed, so she could get out herself and not call us to go get her since she is usually the first one up around 8am!!! Oh well, she'll learn soon enough I'm sure. For now, I should enjoy it b/c if she's anything like her brother...she'll be driving us nuts soon getting up and down out of bed and not wanting to go to sleep!!! LOL

Her hair is starting to get really long. She HATES it when I try to put ponytails in so it's not so wild and crazy when we go out!! LOL

She is talking A LOT, maybe a little too much!! LOL! Her speech is not as clear as Lil' Chris' was at this age. She has problems with her "R's" and "L's" so we are working on it. Her pediatrician says it's normal at this age and she will get better when she starts school probably. For now we just keep correcting her and it is soooo funny watching her stick her tongue way out for the "L's." :) I can't help but laugh sometimes, it's so cute:)

She can spell her name and pick out the letters, but she can't write them. She's a little stubborn when it comes to writing, but I remember Lil' Chris was too at this age. We'll have to practice lots before she goes to preschool, possibly this Fall. Ever since we got the iPad, she's been learning her letters and numbers more and more. She works that thing better than me!! She goes from one game to the next game, and she can look at pictures and blow them up...I wonder what the future of these kids will look like with learning all this technology at such a young age?!? :)

She is very particular about things being in their right spots. She will usually correct what Lil' Chris does if it is wrong. For example, if he takes his jacket off and just throws it on the floor, she will come and pick it up and put it on the chair where we usually put their coats all the while saying "Chris! It goes over here!!" She's kinda motherly to him in some ways, even when it comes to him doing his Vest or taking his pills. She will remind him if I tell him to do something and he doesn't do it right away:)

She still sucks her pointer finger on her right hand when she sleeps. Not sure how I'm going to stop her from doing this. Her teeth are really starting to stick out b/c of it though, so we'll have to start doing something really soon.

Lastly, she can be VERY stubborn when she wants to(I have the video's to prove it;) LOL!! But overall, she is a pretty darn good kid! She listens very well and if she doesn't, she does what I tell her usually by the time I count to 3, b/c she knows she will get a spanking if she doesn't. She rarely has to sit in time out, but when she does, she sits very well until I make her apologize for usually hurting her big brother and then gives him a kiss and a hug....I make them do that part more for ME than for them, b/c it just too cute;-) LOL

Today I came across Lil' Chris' 3rd birthday video that apparently I never got around to editing and posting, sorry about that;) Better late than never, right??? Sorry it's not edited completely:) Check out the video below...I can't believe how little Ayla was!! Her hair was soooo short and she wasn't even talking!! Lil' Chris looks so different with longer hair too:) He now gets buzzed by Mommy just like Daddy does...his first buzz cut by me was last month;-) I think I like him in shorter hair, it looks cute:) You'll see in the video that he doesn't get a break from treatments on his birthday...his day STARTED with the Vest and ENDED with the Vest with no complaints! He such a good kid:)

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I hope you enjoyed the pics and videos,
M

Pulmozyme Decision / New Prevacid Capsule

After much thought, research, and prayer, our decision is in about the Pulmozyme....kinda;) LOL

This past Monday, I had to call the CF clinic b/c they left me a voicemail that he could no longer get the Solutab Prevacid that he has been on for years. So, now he is on the capsule Prevacid. They are just like his enzymes except bigger and a different color. He takes one 15ml capsule each morning. He's such a trooper that he can take all 3 enzymes AND prevacid all at once with a drink!!!! If you look in the pic below, you can see the aqua color capsule next to his enzymes. I took this pic for his 2012 Great Strides Video(see at top of blog:) Won't you please donate today?? :)

Ok, back to that phone call... when I called the CF clinic, I asked for my fav nurse and I was sooooo glad she was there!!! After we got the Prevacid thing settled, I started asking her about the Pulmozyme. She told me all about it and gave me a website to look up with videos. Its just Pulmozyme.com. I looked it up and right away was very encouraged b/c I saw 3 fellow adult CFers that I knew...Ronnie and his wife Mandi Sharp from Run Sick Boy Run CF blog and who founded CysticLife.org...Emily Schaller the founder of Let's Rock CF and the "You Know" You Tube videos which are Ellen Degeneres-like shows about CF(they are AWESOME), and Isabel Stenzel Byrnes who has a twin sister with CF too and they wrote a book about CF called "The Power of Two" I can't wait to get my hands on it and read it, b/c those girls are Amazing!!! Also, Isabel told me that her movie should be coming to OH soon!!! YEA!!! So, needless to say, when I saw the CFers that I knew, I felt very comforted!! When I started watching the videos, I realized that I had already watched them before at some point! I watch lots of videos that people post, just in case I will need that info for Lil' Chris. I especially liked the "How Pulmozyme Works" video.

Alright, back to my call again...I WILL get to our decision eventually;-) LOL As I was talking to my fav nurse, she was telling me that Pulomozyme is more like a preventative medicine. It will help keep his mucus thinner so he can cough it up and out easier. She mentioned that Pulmozyme has been around for 15-16 years and it usually increases the FEV1. She went on to tell me that they usually start this around 5 years old and are on it for life. Now, I always knew that more treatments would eventually get added, b/c I know so many CFers around the world, esp adult CFers that do 3-4 hour treatments every morning and night...but I guess I was thinking it would happen later on since he is doing so well, not in just a few months!! YIKES!!! She said it's not very effective if it is used just when he has a cough. They have seen better results in long term use. This med may prevent a lung infection, a hospital stay or many, and will hopefully help his cough get better b/c it will make him cough more to get it out.

I asked her about HTS or Hypertonic Saline which is very similar and I know a lot of CFers on it, some even do both Pulmozyme and HTS! HTS has only been around for the last 5-6 years. It does not have to be refrigerated like Pulmozyme does, and it is more natural. HTS is also cheaper. It draws more water into the airways and makes it easier to cough out the mucus. Pulmozyme is approved my FDA and works to thin mucus so people can cough it out easier. Fortunately, it looks like our insurances will cover it...THANK YOU LORD, b/c Pulmozyme is $2,000 for a 30 day supply!!!

CFF.org has some great info on both, so click these links or any of the color links above to learn more...
Pulmozyme-http://www.cff.org/treatments/Therapies/Respiratory/Pulmozyme/
HTS-http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

So, as I was talking to the nurse, I was telling her about my rough experience at my last visit. (BTW, thank to my fellow CF moms who helped me get through that rough time by sharing your stories with me:) She apologized and offered to get a second opinion from another doctor, who is the director of our CF clinic as well. He suggested one more week of Bactrim to see if his cough will clear up completely(he has one more day left and he isn't coughing, but when I ask him to cough, you can still hear that it is a little bit wet). He also didn't think that Lil' Chris needed to go on the Pulmozyme right away. He suggested that we do some research on it, and come back to our next visit in 3 months with all the questions we have about Pulmozyme and HTS and ask our doctor. His next visit is on May 16th and I've already got a list started...I LOVE the list app on my phone;)

Since talking to this nice nurse, it's seems as though if we want to keep Lil' Chris "healthy", then we are going to have to start one of these chronic medications soon. He will continue his Vest as usual and will do this new treatment either before or during his Vest either in the morning or at night. I can't believe he has been on his Vest for over 1,100 HOURS!!! My husband and I have a BIG decision as to which one to go with. I'm kinda thinking Pulmozyme, and Chris is kinda thinking HTS. Which one is better in the long run...that is the big question!?!?

Chris and I were trying to decide whether to start him on it in May, or wait til his next appointment in August, when he'll be 5 years old, since it has only been tested in 5 year olds and up. Actually, the CF Foundation recommends it in 6 year olds and up, but if we wait too long, he could possible get irreversible lung damage....we DEF don't want that!!! I say we start it in May, that way he will have a couple of months to get used to it and get into a routine before he starts Kindergarten in August....YIKES KINDERGARTEN!!!! That's a whole nother story;-) LOL

Although it is disheartening to add one more chronic treatment to his daily life at such a young age....this is NOT the end!!! There are new drugs in the pipeline that are tackling the basic defect of CF. I've talked about them before, but we are getting closer and closer now! Kalydeco (previously known as VX-770) is a new oral medication that was approved by the FDA on January 31, 2012 for people with CF ages 6 and older with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. Although this won't help Lil' Chris yet, b/c his CF genes are Double Delta F508, doesn't mean that there is no hope. They are doing test now on DDF508 patients to figure out a way to get it to work for them too:) They say possibly within the next 5-10 years!!! THIS COULD BE THE CURE THAT WE HAVE BEEN PRAYING FOR AND RAISING MONEY FOR!!!!!

So what does this mean?? We need to keep praying and keep raising money so they can do their research and GET US THAT CURE!!!! This past weekend was my birthday weekend and I decided that the best present possible, would be donations for A CURE for Lil' Chris and all with CF!! So, many many many thanks to Nancy & Al, my Aunt Mar, my Dad, Mandi W, and Melissa V for all donating in honor of my birthday and it truly was my BEST birthday EVER...not b/c we went skiing or went to see Monster Jam(that was pretty cool seeing the big trucks up close tho;)...it was the $440 donated by you guys that is going to help save my son's life some day!!!!!!

So PLEASE CONSIDER DONATING TODAY EVERY SECOND COUNTS...click this link http://www.cff.org/Great_Strides/LilChrisChris6765

Thanks for being so patient with me in our decision on Pulmozyme and keep praying for a CURE!
M
PS. His throat culture results was Staph Areus sensitive to Oxycillin(MSSA) his usual, so YEA FOR NO NEW BAD BACTERIAS!!!! PRAISE THE LORD!!!

CF Clinic Visit / Pulmozyme / 3rd PFT

Lil Chris had his first quarterly visit of the year with the CF clinic today at 4 1/2 years old. His weight went up from 40 lbs to 41.2 lbs, 60th percentile. YEA!! His height was up from 42 inches to 44.5 inches, 90th percentile!! His BMI on the other hand went from 30th to 20th percentile. BOOOOO. His doctor asked me if we have a lot of tall people in our family. LOL! She said that his BMI is so low b/c he is getting very tall quickly. She didn't seemed too worried about it even though they like CFers to be above the 50th percentile.

I told her how he has been eating a few more things since last time....jelly sandwiches, and cheese & mayo sandwiches, and I told her how he likes chicken nuggets and he even ate 10 one day for lunch!!!

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She said that his lungs sounded clear and everything looked good and we wouldn't change any meds. I asked her if he should stop the Bactrim in a couple of days when it is done, or if he will need more? I told her he isn't coughing much, but when he does cough, it is a little wet sounding still. She said to stop it when its done. He didn't cough the whole time we were there until right at the end. She heard that little wet sound and said lets do a PFT test and then she would come back and make a plan of attack. She said she would like him to not have any cough at all and he shouldn't have a chronic cough yet.

He did great on his PFTs, but they were a little bit lower than last time. The girl said it was probably b/c he is just getting over a cough. Last time his FVC was 94 and his FEV1 was 94...this time it was 89 and 96. One went down and one went up.

FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired.

FEV1 - Forced Expiratory Volume in One Second - this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory manuever.

When we came back in our room, I thought we were going to get to talk with our dr about a plan of attack, but we'll call her "nurse P", the nurse was there waiting for us with a bag. My first thought was OH NO!! She said that our dr thinks we should start Pulmozyne daily before his vest in the morning(I think Nurse P had some influence on this decision). This is a mucus thinner. It will help thin his mucus so that he can cough it up easier and spit it out. This "may" get rid of his cough, but it also may not be right for him. We would have to try it and see. It is about a 10 min neb, so we would have to get a nebulizer machine. This would be his first nebulizer medicine!! It's supposed to be done before his vest, but he can do it during his vest she said if we are running late.

Nurse P suggested in the beginning of our visit that he should do his Albuterol and Acapella every day instead of only when he has a cough. That he should get used to doing it now while he is young, since he will have to do it every day when he is older. If you look at past posts, you'll see that Nurse P is the one and only nurse that has always said he should be on a neb. I'm sorry, but if our dr's never thought he needed it then.....

So I was trying to ask her some questions about this Pulmozyme and she was telling me about it and how it will have to be sterilized each day and everything....but she wasn't exactly saying how long he would have to do this Pulmozyme. I kinda knew deep down from knowing so many CFers, but then she said that this would be "FOR THE REST OF HIS LIFE!!"

Just hearing those words again was a shot through the heart. We first heard them on the day of his diagnosis..."he will have Cystic Fibrosis FOR THE REST OF HIS LIFE"...."he will do his Vest FOR THE REST OF HIS LIFE"....and now "he will do this Pulmozyme, Albuterol, and Acapella FOR THE REST OF HIS LIFE???"

So today's clinic visit was a little frustrating for many reasons to say the least...

1. When we got there, we had to wait in line....yes, I said wait in line with other CFers....just to check in. 3 or 4 other kids like Lil' Chris, all wearing masks and within a few feet from each other!!! I was FREAKING OUT inside!! I let the girl know when it was finally our turn!! She said something about it being busy, and I said "Yeah, it's making me VERY nervous all of these CFers so close!" She got the hint and moved us along quickly.
2. Nurse P suggested doing Albuterol and the Acapella EVERY DAY....sorry, but I'd rather a dr tell me something like that!
3. The dr said she was coming back in our room after PFT's and she never did!
4. The nurse has to tell me that he will have to do this nebulizer FOR THE REST OF HIS LIFE!! Again....I'd rather hear something like that from a DOCTOR!!! Just makes me mad!!
   

I don't mind doing this neb if it's really going to help him, but if he doesn't really need it, then I'd rather not start him on it until he needs it.We do have to worry about him becoming immune to certain meds, as he may need them more when he is older.

Some CF Questions...

1. Can Pulmozyme be used just for coughs or does it have to be used long term?
2. Is it something that he would have to be weaned off of once his cough goes away?
3. Can he become immune to Pulmozyme after a while? It seems like just about every CFer I know, young & old, do Pulmozyme every day. I need to do some research!
   

So, I was told to go home and talk it over with my husband and decide whether we want to go ahead and do it every day for the rest of his life, try it for 30 days, or not try it at all. It's up to us. GREAT!!! I talked to my husband and he said he doesn't think he needs it yet and to just wait and see how he is when his Bactrim is done. He said that his cough usually isn't all gone until right at the end of the antibiotic anyways.

I miss our old dr. He used to put Lil' Chris on an antibiotic for 30 days and his cough would be completely gone by the end of it. Ever since we got this dr, she only wants him on antibiotics for 15 days...his cough isn't gone in 15 days!!!! So frustrating, b/c I've tried telling her this, but she doesn't want him on it longer than 15 days. I guess b/c you run the risk of becoming immune to it sooner...idk??? It just seems like he hasn't completely gotten rid of his cough in a very long time. As a CF parent you just feel so defeated...have we made the right choices in the past...are we going to make the right choice now???

All I can think of is to "empty my hands" and leave it up to God. I'm going to pray about it and follow God's lead as to what to do. Please pray with us for God's guidance and strength. Deuteronomy 20:4 "For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory." Cystic Fibrosis is our enemy....go get CF God!! :)

On a good note, Lil' Chris did such a GREAT JOB at clinic today!! He did so good during his throat culture that the nurse said that he should teach all the other kids to do it as good as him!! Nurse P asked if maybe we could get a video of him doing his Acapella and PFT's to show the other kids who don't even do it at this age!

In the 2 hours we were there, the kids were really good between watching TV and playing with the iPad, that I just had to take them to Chuck E Cheese! I didn't really feel like going after we got hit with the Pulmozyme news, but I knew I had to be strong for the kids and not let them see me get upset. So I let them play and I vented to my sister D on the phone:) Thanks D for always being there for me!! I'm trying not to talk negatively about it near Lil' Chris, b/c his lil' ears hear everything, if you know what I mean;)

I'll let you know what his throat culture results are when I call in a couple of weeks. Please pray that there are no new bad bacterias.

Sorry for venting on here, but sometimes I just gotta let it out!! I know Pulmozyme isn't the worst thing. It could definitely be worse!! Lil' Chris has been soooo blessed that he has made it 4 1/2 years with no nebulizer!!! It's almost unheard of in the CF world!! Some of my CF friends probably think I'm crazy complaining over just a neb, but it's just the "FOR THE REST OF HIS LIFE" thing that gets me. I'm sure every CFer and CF parent feels defeated every time they hear those words. WE NEED A CURE NOW!!!!!!! Time to start fundraising!! I need to clear my head of all of this and focus on fundraising, so that no CF family will feel this way ever again!!!!

Thanks,
M

SURPRISE!!!!!

Here it is, our big announcement to the kids...

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We surprised the kids with a trip to DISNEYWORLD!!!! WOOHOO!!! It was soooooo much fun!!! We ALL had a BLAST!!!! It truly is a magical place:)

Don't worry, the video above is not the only video I got! More pics and video coming soon:)

I couldn't believe how tall the kids have gotten since last May when we went!! Lil' Chris is 44 inches and Ayla is 38 inches!! They got to go on extra rides this year!! Lil' Chris got to go on his first really BIG roller coaster!! I thought he was going to be scared(I was), but he LOVED it!! He went 2 times with Daddy and 2 times with me:) I couldn't help but watch his face the whole time laughing and giggling, even though I was afraid of hurting my neck on the twist and turns;-)

So get this...I got the letter from the CF clinic like last time so that we wouldn't have to wait in the hot lines b/c he has a fatal lung disease....and wouldn't you know...when we got to the park the first day, I had forgotten it at our hotel room!!! UGHHH! So I went to talk to them to see if I could get that pass at any park and the girl said "What did you need?" At first I didn't know what she meant. Then I said, "Well, last year they gave us a pass for the rides and also one for our stroller." She said "How many are in your party?" I said 4. So she wrote them up and gave them to me!! I was SHOCKED!!! I didn't even have the paper or nothing!! I was soooo happy tho, b/c we ended up going on a lot of rides that night. We got to go on a lot of rides EVERYDAY thanks to that pass!!! We would just get right on!! We even got to skip the lines for the characters autographs too!!! Although, I usually felt bad doing those, so we would only do it on the really long line ones, like for Mickey:) It was AWESOME!! The one and ONLY good thing about Cystic Fibrosis! I'm just so happy he was healthy enough to go again!!

I was a little worried about what the weather was going to be like, but the Lord blessed us with an absolutely beautiful week!!! It was in the 80's the whole time and no rain until we were driving home, then it rained a little on our drive!! Usually when we go to Disney, it is soooo hot that I have to use a fan/water squirter, but I didn't have to use it at all this time!! We even went to Blizzard Beach Waterpark the last 2 days and didn't have to worry about burning our feet on the hot concrete!! Both kids went down water slides that I was even leery about going on at first;-) LOL

Unfortunately Lil' Chris developed a cough on the second day. I think it was b/c we went swimming in our All Star Sports resorts heated pool late at night and then when we got out, it was a little chilly. I guess too much for his lil' lungs, IDK. Anyway, that night he woke up at about 2 in the morning with that weird barking cough that he had once before. He coughed for a lil' while and wanted to lay with me. Luckily I brought his inhaler and Acappella. He eventually calmed down and fell back to sleep. His cough didn't sound as bad when he woke up, but he did have a lil' cough the rest of the week, and by the end it turned into a wet nasty cough. Monday 1/30, when we got back home, the first thing I did was call the CF clinic. They got him on an antibiotic right away, since he cultured a new bacteria last time. He cultured his usual Staph Areus(MSSA), and then Stenotrophomonas (Xanthomonas) maltophilia, which is new, but they said does not need treatment unless he is ill. They said that this is a common bacteria and may come and go in his cultures from time to time.

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The CF nurse doesn't think it was b/c of the pool, but who knows?? He could've caught something at the park or at a rest stop on the long drive. Going to Disney is always a risk we take. I was especially nervous this time, b/c we went in cold and flu season. I guess in a way we are lucky he only got a cough and not the flu.

So he is taking Bactrim 2 times a day, 12.5 ML each time...that's the most I think he has ever taken!! Please pray his cough goes away completely, it's already starting to get better! He has a CF clinic appt on the 15th, so I'm praying it will be gone by then and his new throat culture won't have any new bacterias. Stinks he will miss his preschool Valentine's party;-( I was so sad when I noticed that, b/c that was my favorite day of the year growing up and I got all excited he was going to have one this year. Oh well, it's not like he doesn't have 12 more years to go, right?

My sister D and bro-in-law were nice enough to let us stay at their house on the way to Disney and back to break up the looooong drive. It was soooo nice spending time with them!! I really miss my big sis! I had a lot of fun painting nails with my nieces too. They are getting so big!! Lil' Chris had fun playing new video games with his cousin:)

On Sat 1/28, we celebrated Ayla's 3rd birthday!!! YEA!!! It was so nice celebrating with my family:) Ayla loved all her princess presents, esp the castle that Aunt D got her;) Pics/video coming soon, I have to finish editing it:) The story of my life!! LOL I noticed I have a ton of video's that I uploaded but never posted b/c I never finished editing them. Hmmmm I wonder if I can edit them on my iPad??? I'll have to try it.

Oh yeah, not sure if I mentioned it on here...I won an iPad2 at work!!!! I still can't believe I won it, I never win anything!! I'm soooo very thankful for it tho, b/c Lil' Chris loves playing with it while he does his Vest....I love it b/c it keeps him quiet during his Vest;-) LOL Plus it's a good incentive for him not to complain about putting his Vest on..."If you put your Vest on, you can play the iPad!" He usually runs right over;-) Sooooo nice!

On another good note about work, I was accepted into the Advancement into Management training!! I'm already part of the management team, but on the low end. This will make me an Executive...an Assistant Store Manager:) I've already completed my training and am just waiting for a position to open up!! I'm REALLY hoping and praying that I get to stay at the same store!!! I really don't want to be too far away from Lil' Chris if anything were to happen with his breathing. Also, IF he were to ever get hospitalized, I may still be able to work since it's only like 5 min away. Please pray with me that I get to stay at my current store :)

Thanks,
M
PS. Ayla developed a stuffy nose last week, but so far no one else has caught it...maybe allergies or something b/c it's not bad at all???? Probably something to do with this crazy warm winter we are having! Although....it IS SNOWING NOW!!! YEA!!!