Happy 4th Birthday Ayla!!

HAPPY 4th BIRTHDAY AYLA!!!

I can't believe that 4 years ago today I gave birth to such a beautiful baby girl!!

WE LOVE YOU SOOOO MUCH!!! I can't imagine what our lives would be like if God hadn't blessed us with you! Thank You Lord soooo much for giving us such a wonderful, smart, funny little girl:)

We hope you have a GREAT BIRTHDAY SWEETY!!!

Love,
Mom, Dad, and Lil Chris
PS. Praying she and Lil Chris don't catch my cold:( Big thanks to Stacy A. from work for recommending I take a tbsp of honey with a little bit of cinnamon...it really works!! I take it every 4-6 hours and it really helps!! Thanks Stacy!!

CF Update

Lil' Chris is doing very well on the TOBI and Cipro!! Praise the Lord!! He has no cough at all...not even a TOBI cough yet! Please continue to pray that these meds work to get rid of the Pseudomonas.

Alya's sore throat is all better! YEA!! Unfortunately my husband's nose has been running, so praying that the kids and I don't catch his cold and that it's just allergies or something.

Please pray for Tricia, adult CFer, who has had a rough time lately. Also pray for little Aubrey who has caught the bug going around.

I can't believe Ayla's 4th birthday is on Tuesday!!! Where has the time gone?!? I let her pick our her cake today. She chose Tangled. We have been watching that movie a lot lately;) She doesn't even have any Tangled toys and that's not what I got her for her birthday, but that's what she wanted for her cake:) LOL!!

 HAPPY EARLY BIRTHDAY, AYLA!!!

WE LOVE YOU!!! 

Thanks,
M 

CF Update / Bad Virus or something???

TOBI arrived Wed evening, but we didn't start it til Thurs morning. He has been doing great with the TOBI, but he HATES the cipro pill b/c it is chalky. I hate Cipro b/c he can't have any milk or cheese 2 hours before or after taking it...I'm sure he hates it b/c of that too;p The reason is, b/c it makes the Cipro not work as well apparently.

Thurs he came home from school with some kind of virus. I was very worried it was the flu, but thankfully it seems like it was just a 24 hour bug or something. He had a very bad headache in the middle of his forehead, a sore throat, and a bad tummy ache. He was just lying around with no energy. Then around 6pm he started throwing up off and on until 11pm. He was throwing up like he had Soy Protein which he is allergic to, but he usually doesn't have the other symptoms with it, so we aren't sure what he had. Today he seems fine. He took all 8 pills and ate his whole bowl of cereal and has been running around playing with Ayla!! Then he did his Albuterol, Vest, and TOBI. For some reason, the TOBI seems to be taking a lot longer this time than it did a couple months ago. Not sure why, it's the same dosage. Maybe the setting on the machine got bumped. I'll have to check it out.

I almost took him to our Pediatrician yesterday, but our CF clinic(by the time they finally got back to me) said not to take him b/c it's too dangerous for him b/c he could pick up something worse. I almost still took him, but he refused to go and I thought maybe that was a sign. So I didn't take him and I am sooooo glad I didn't b/c he is doing so much better!!! Who knows, if I would've taken him, he could've picked up the flu that's going around like crazy and then possibly end up in the hospital. Good thing Lil' Chris knows his body;-)

Unfortunately Ayla is complaining of a sore throat today, so I'll have to keep a close eye on her:(

I have soooo much to do to get ready for the walk and fundraising!! No better place to make a list than on my blog, right?? LOL...

1. I have to make a new fundraising video or at least update my old one;p I've used that one like 3 years in a row, so I really want to make a new one, but it's so time consuming, so we'll see. 
2. I also have to start working on the 30 second CF commercial for Clear Picture. So far I have pics from Denna with Aden doing his treatments. Thanks Denna!! She is really on the ball!! I still have to take a few pics of Lil' Chris;)
3. I have to get all the food nailed down for the walk...Dominos, McDonald's, Panera Bread, Frito Lays, Buehler's fruit, and ice from Speedway.
4. I have to contact the radio stations
5. I have to nail down some of the entertainment for the walk...Dr Dave who makes the best balloon animals and Pat Catan's for a craft table. 
6. And most importantly...I have to raise money for a CURE!!

Samantha, Denna, and Alma are doing a lot to get ready too...
Samantha is going to contact the police dept and fire dept to try to get a police car, ambulance, and fire truck for the kids at the walk. She's also going to contact the newspaper to get an article about the walk. Try to get water donated for walkers. And Samantha, Denna, and I are working on getting prizes for the walkers:)  Alma is going to make her WONDERFUL cookies again and maybe some of her famous cupcakes too;) She is also going to try to get water and soda donated. The 4 of us are also going to try to put together some signs, one for each of our kids to put up around the walking path with info about our kids and their pic on it:)

So, lots to do and only 3 months to do it!!! It's going to be soooo much fun!!! I can't wait!!

Sign up to walk today and if you can't walk, but would like to sponsor me, click this link as it is 100% tax deductible and will get us one step closer to a CURE for Cystic Fibrosis...

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

 
Thanks for your continued prayers that Lil' Chris kicks this Pseudomonas out!!!
M

2012 Great Strides Totals / TOBI Update

Totals are in for 2012 fundraising...our walk raised $16,800 for a CURE for Cystic Fibrosis!!! WOOHOO!!! We've come a long way since our first walk where we raised like under $5,000 I think:) Each year we raise more and more for a CURE for Cystic Fibrosis and I can't THANK YOU ALL enough!!! It means soooo much to all us CF families!!!

Our A Cure 4 Lil' Chris team raised $6,967!! WOOHOO!!! That's awesome!! My calculations were over $7,000, but one of the Kohl's grants took longer than I thought and actually is on my new 2013 Great Strides Walk page:) That's ok, I'm starting off with a bang!! Although had I realized, I would've put in the extra $33 to put us at $7,000 ;-) LOL Oh well! Here is my link for 2013, who's gonna be my first sponsor? Remember, it's 100% tax deductible...

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

Yesterday we had a GREAT 1st meeting to kick off the new fundraising year and start getting ready for the walk this May 5th, 2013 at 11am!!! I'm really excited about this year, b/c we have 2 new committee members who are really motivated to not only have a great walk, but most importantly raise as much money as possible for a CURE for our little ones and all CFers. Big THANK YOU  to Samantha and Denna for being so passionate about a CURE and wanting to help in any way!! 

Samantha has a 9 month old CFer named Aubrey. She is the cutest lil' thing:) She was diagnosed at 3 months old. Her older sister, Makayla, went to preschool with Lil' Chris:) I wish they could hang out more often since we live so close, but it makes it hard having cfers in both families as we have to be careful of cross-contamination:(

Denna has a 9 year old son named Aden with CF and another son without CF named Alex. Aden was just diagnosed a little over a year ago. Denna has a great outlook on becoming a committee member, "It'll be good for not only myself but also Aden and Alex. Just for them to learn that no matter how small the contribution, every person can make a difference." Together, the 5 of us...Denna, Samantha, Alma, Kathy, and myself...can and will make a BIG difference!! :) Denna has already jumped in and has started getting things going for the walk and it's only been one day!! And Samantha has already gotten prizes for the walk and has done a few fundraisers already!! I'm soooo proud of these 2 ladies and proud to have them on our committee:) It's gonna be a GREAT Year!!

BIG THANK YOU TO NANCY, my sister D's mother-in-law, for doing a Yankee Candle fundraiser for CF and raising $267.60!!! WOW!!! That's AWESOME!! The cool thing is...I didn't even ask Nancy to do this, SHE came to me with the idea!! I LOVE her passion for a CURE for CF!!! Nancy has always been a BIG supporter of Lil' Chris and has donated each year and is always thinking of new ways to raise money for a CURE!! I can't THANK YOU enough, Nancy!! We love you!!

As for a CF update on Lil' Chris...his TOBI should be arriving today on our doorstep. This will be his 2nd time on TOBI and Cipro. We have had the Cipro for a few days now, but we had to wait until the TOBI got here to start it, b/c they have to be taken together. If he cultures Pseudomonas again after this next 28 days of treatment, then he will be on just TOBI, not Cipro and TOBI, every other month:'( Please pray this doesn't happen. If it does, then we'll take it one day at a time. 

WE NEED A CURE NOW!!!!!!! They are soooo close with the new drug Kalydeco combo. Lil' Chris just needs to stay as healthy as possible until it gets done Phase 3 and clinical trials, and gets approved by the FDA. Please pray this is a CURE or a better control of the lung issues associated with CF!

Thanks everyone,
M  
PS. Happy Birthday to a faithful blog reader, Kevin W.!!! Hope you have a great day!!! ;)

Soooo Needed to Vent...Pseudo is back for 2nd time;(

Sorry it's been awhile since my last post. The kids and I have had fun playing with their new Christmas toys:) I can't get enough of these kids :)

Thank you to everyone who has still been checking in on the blog! We DID end up hitting 40,000 hits before the end of 2012!! WOOHOO!!!

Ayla's medicine worked and her cough went away, thank God!! Lil' Chris never caught it, PRAISE THE LORD!!!! He has been cough free!! Everyone here is well, no coughs and no colds...knock on wood;) The flu has been going around like crazy at work. Please pray that none of us get it, esp Lil' Chris. It could put him in the hospital.

We had a FANTASTIC Christmas, New Year, and even got to play in the snow and go sledding!!! I posted pics and video's on fb. One of these days I'll try to find some time to upload some video's on One True Media again:) It's just very time consuming since this laptop is so slow. I've started so many video's, but then gave up b/c I get too frustrated and I don't want to break a window by throwing my laptop thru it;p LOL

Lil' Chris got his ski's that he asked Santa for, and Ayla got her Minnie Mouse dressed in Christmas PJ's that she asked Santa for:) Too funny:) Lil' Chris also got a new 3DS XL and lots of games for it. He LOVES playing it and even tried to sneak it into bed with him Christmas night:) LOL Ayla got a new big girl bed!! She loves it b/c it has a slide and a lil' playhouse underneath:) Now she has a Minnie room:)

They also got their own tablet, so now maybe Mommy can actually touch her iPad;) LOL They both LOVE it!! Ayla calls it a tabalet:) LOL When she wakes up in the morning, she comes quietly into our room and grabs the tablet or iPad off the charger and then either goes in her room or goes downstairs and plays quietly til we all wake up:) She is such a good girl!!

As for a CF Update on Lil' Chris...at the end of December, we went to the CF clinic to get a throat culture to see if the Pseudomonas is still there after doing his first round of TOBI...well, did we have fun on that trip!!! First off, my husband couldn't get that day off, so I had to take the 2 of them all by myself and I HATE driving up there! Second, we were only 10 minutes away and Ayla decided to pee in her pants...yeah...sooooo much fun!!! So of course I have no extra clothes b/c she has been potty trained for over a year! So I call the clinic and tell them I'm going to be late. Then I pull over and search in the GPS(thank God I had a GPS!!) for the nearest Walmart. I start driving and then I see a Kohl's closer than the Walmart, so I go there. 

So after that, we start heading back and the GPS can't find the stinkin clinic!! It kept taking me in circles!! I had just about had it, if you can imagine! Finally I find it and we get there and have the appointment and get his culture. I honestly contemplated just turning around and going home once Ayla peed, but I didn't. It's a good thing, b/c I told the nurse that he has been getting tummy aches and that his stool was oily once. So she called in the dr and she felt his tummy and could feel something. So she upped his enzymes to 4 or 5 instead of 3 every time he eats. He has been on 3 for a long time, maybe since he was 2, so about 3 1/5 years. My husband and I figured that's what they were going to do, we almost just started upping it ourselves. So he now gets 4, but if it's lots of cheese or something, then he gets 5. So far, he has been doing better with that.

So Lil' Chris got his culture by a new guy I think, b/c I had never met him before. Then as we were leaving, we passed some workers in the hallway that had a huge cart of toys and they told the kids to pick whatever toy they wanted:) Their faces lit up!! Ayla got a dr doll and Lil' Chris got a batman toy. They also got coloring books and markers from our fav nurse at the CF clinic, so it turned into a better day after that:)

That is until.....I didn't hear from them about the results and when I called, I find out that they "threw away" his culture!!! I was livid!!! Esp after all we went thru to get there!!! So we had to make another appt to go all the way back up to the cf clinic to get ANOTHER throat culture! I asked again if we could just get it done at his pediatrician, but the nurse said no, that the clinic does it "different"...idk, whatever at this point. 

So we go to the cf clinic on January 2nd and get another throat culture. Of course Nurse P was there and did the culture herself. She came in our lil' tiny room and goes right up in Lil' Chris' face while he is sitting on the table or whatever you call it, and she proceeds to open the stuff to do the throat culture. THEN she goes over to the counter and starts putting her gloves on and says "I'm gonna put a mask on b/c I'm fighting a nasty cold." I about got up and smacked her!! She was JUST in Lil' Chris' face with NO mask and touching the stuff that was going into his MOUTH without gloves!!! I couldn't believe it!! 

So she does the culture, then what does she do....she takes the mask OFF and proceeds to talk to us about how she is calling a meeting b/c they threw away the last one and blah blah blah....Seriously lady??? The room is like 4 x 4 and your gonna stand there SICK and talk to us with our CF son?!?! I was so shocked I couldn't even talk! I just tried to pretend like I was putting his coat on and tried covering his head until she left. I WAS FUMING MAD!!! I told my husband that if he gets sick from her, I was going to let her and the clinic have it!! 

Fortunately he didn't get sick. But I have started a list of all these things to put on the survey that they make us fill out each year. I'll let them have it on there for sure!! And if something like this happens again...I will not hold my tongue!! I will ask to speak to the director pronto!! And can you believe that they didn't even offer to validate parking?? I would've said no, but the offer would've been nice since they made us drive all the way up there for ANOTHER culture b/c THEY threw it out by mistake! So fed up right now!

Now onto even worse news...we finally got his culture result back and unfortunately he cultured Pseudomonas again:( :( :( He will be on Cipro and TOBI again. Not really sure where to go from here, since I got this news on my Voicemail AGAIN!!!! Seriously thinking about switching CF clinics after all of this. I may make some phone calls on my next day off. Honestly...if it's something this important...CALL ME AT WORK!!!! This is 2 times in a row I have found out that he had Pseudomonas from my voicemail!! Unbelievable! So now I have to take my whole 1/2 hour lunch break at work to make phone calls to find out how to get the TOBI, b/c I guess they changed it starting this new year and we can't get it at CVS now. Also, I have lots of questions for the CF Clinic, as you can imagine. If they would've called me back right away today, I could've done this, but now I have to work the next 2 days, so it's going to be hard to get all this done!!! ARGGGGG!!!

Anyways, thanks for letting me vent. This 2nd culture of Pseudo is baffling me. Is it his new school?? I know his teachers are very good about sanitizing his hands often. They even wear the sanitizers on there hip like I do! Is is from the Pulmozyme?? This is something new we started this year, so maybe the Pulmozyme has something to do with it?? IDK. It could be anything I guess. I just pray that this 2nd round of TOBI and Cipro knock it out so he doesn't have to do it every other month.

The weird thing is...he's not even coughing! But I guess that doesn't mean that those bad bacterias aren't still lurking around in his lungs doing bad things. Please pray we figure this out and that it doesn't lead to worse things. His next clinic appt is Feb 20th.

Thanks,
M 

CF Update / Ayla's still coughing :(

Lil' Chris is still doing VERY well!! NO COUGH STILL!!! WOOHOO!!! THANK YOU SOOOO MUCH FOR ALL OF YOUR PRAYERS!!! KEEP THEM COMING!!! I've even gotten him to eat a little bit more!! It helps that I have all their Christmas presents bought and wrapped, so I can bride him to eat more. It's worked so far... he ate 7 chicken nuggets one day, and he ate a small bowl of mac n cheese another day just so he could get a present afterwards!! He NEVER would've touched the mac n cheese if he wasn't going to get a present for doing it;-) LOL Plus, I don't mind giving them early gifts anyways, b/c that way they get played with more, since Christmas day is a little overwhelming with a TON of presents...if you know what I mean:) lol

Ayla still has a nasty cough:( I took her back to the dr's yesterday, b/c she finished the 5 days of Azithromycin and still had a nasty cough. The dr put her on another antibiotic, Augmentin. She doesn't like the taste, but she has to take 5ml 2x a day for 10 days. Praying this will kick her cough out! The dr probably wouldn't have put her on anything, but b/c of the risk of Lil' Chris catching her cough, she decided to go this route. The Azithromycin is supposed to keep working like 5 days after you get done taking it, so hopefully with the combo of these 2 antibiotics, she will get better. The dr. also wants to see if the combination of the Albuterol puffer and the Augmentin will work well together, so she is doing the puffer in the am and pm and when needed. Ayla has a PURPLE spacer/chamber for her puffer:) She likes that! When I gave it to her last night for the first time, she said "Now Chris and I can do our medicine at the same time!" Too cute:)

We are very close to 40,000 hits on this blog!! WOOHOO!!! Can we hit 40,000 by the end of 2012??? Pass this blog along to your friends and family!! We could always use the extra prayers;)

Thanks, and I'll let you know how his dr appt goes on Monday. Praying for NO PSEUDOMONAS!!!
M  
PS. Lil' Chris had a bad night last week. We think it was from some cheese curls he had. The bag didn't say it had Soy Protein, but he was throwing up all night like he normally does when he has Soy Protein:( He missed school that next day, but has been fine since thankfully. 

CF Update / Ayla has a cough:(

Lil' Chris is still doing great! No cough! His nose is a lil' stuffy, but NO COUGH!! YEA!! 

Ayla, on the other hand, has a HORRIBLE cough right now:( She is on Azithromycin and the dr gave her a ProAir puffer like Lil' Chris for an as needed basis. So far, she hasn't needed it. She had a fever there for a couple of days, but seems to be getting back to herself now...other than the cough not going away:( 

Please pray that Lil' Chris doesn't catch her cough, and that Ayla's cough goes away soon!!! He goes for another throat culture one week from today to see if the Pseudomonas is still there. Pray that it's not!!

I really like how we switched his Pulmozyme neb to nighttime! It makes the morning go by soooo much easier, esp before school!!!! But I'm glad we originally started it in the morning, b/c it made doing the TOBI in the morning not so bad, b/c we were already used to doing a neb in the morning:)

Hope you are all doing well!! Thanks for all the prayers!!
M  
PS. My toe is almost completely healed!! Thank God I had that surgery/procedure, b/c I got like instant relief!! That was the most painful thing ever!! Taught me a lesson though...never get distracted while cutting your toenails and slip and cut too far on the corner! Even though I could see the corner of the nail, the dr said that somehow some part of the nail was puncturing my skin, which was causing the discomfort. I pray it never does that again!! Best part is, you can't even tell I had the surgery!! :)

TOBI is All Done / CF Fundraiser!!

WOOHOO!!! TOBI ended yesterday!!! When Lil' Chris did his Vest this morning, it was so weird not doing any breathing treatments with it!! That's the first time in 28 days, which seems like we've done it from day one! LOL

HE didn't even notice, but inside I was super excited!! I even got to set my alarm a little bit later, which was soooo nice with all the crazy hours I've been working lately!

Some parents have a little celebration when their kids finish TOBI, but I didn't do that with Lil' Chris. I just didn't want to bring any attention to it, since he did so well with it. I feel like if I celebrate it being done, then the next time he has to do it, he might not want to. IDK.

The one I really wanted to celebrate being done was the Cipro!! That was a pain him not being able to have any dairy products 2 hours before or after the pills! He didn't like that either, but he understood and cooperated. He really is such a good kid!!!!!!!! Except....he DID hide 5 of his Cipro pills under the toy box in the living room!

My husband found them when he went to put up the Christmas tree. My husband yelled at him and then when I got home from work, I yelled at him too. I know he only did it b/c he didn't like the chalkiness of the pill. He's used to the capsule type from his enzymes and Prevacid, or the gel tab type from his Aquadek vitamin pill. BUT, I couldn't let him go on thinking that doing stuff like that is okay. After I yelled at him, I gave him a hug and then explained to him how important it is that he does EXACTLY what the doctors tell him to do. It's only for his own good and to help him get better or not get any worse. He seemed to understand, and took the 5 pills fine over the next few days.

I tried to tell him to put it UNDER his tongue like I do with my chalky lactaid pills, but he kept saying "Then how do I swallow them?" I tried telling him that when he takes a drink, they will float to the top and go down easy and they never touch the tongue and he never has to "taste" them. He couldn't understand how they would float with the liquid, so he continued to make us put the pill on the back of his tongue...practically gagging on it...and then he would swallow it. He never tried it my way, but I don't care as long as he takes them and doesn't hide them again!!

I called the CF clinic and we go back on the 17th to get another culture done to see if the Pseudomonas is gone or not. It will just be a culture visit, but if he starts a cough before then, he will be seen by his dr. Please pray that the TOBI and Cipro worked so that he doesn't have to do them again in 28 days!! As of right now...NO COUGH!!! PRAISE GOD!!!!

Also, please pray for our dear friend Stacy A. She has Bronchiectasis, which is like the sister disease to CF...the same lung issues, but with no digestive issues. She was just admitted to the hospital and just got an IV and may have to get a PICC tomorrow. Please pray she gets well soon so she can get her PFT's back up where they belong so she won't be so short of breath, and so she can return to work. We miss her at Kohl's!! WE LOVE YOU STACY!!! STAY STRONG AND GET WELL SOON!!!

The CF fundraiser the other day went GREAT!! It was so much fun!! BIG THANK YOU to Carrie G for suggesting CF be the cause!! And BIG THANK YOU to each of the 6 different parties for doing a raffle for CF!! And BIG THANK YOU to Deborah for letting us do it at her Garden Market for free!! And BIG THANK YOU to everyone who came and supported CF(It was great getting to talk to Mary, Daniel's mom)!! And one more BIG THANK YOU to my fellow Kohl's associates (Kim S, Roberta, Jolleen, and Cheyenne) for volunteering to do the event to get the $500 for a CURE for CF!! WOOHOO!! I believe that makes $5,000 raised for CF this year alone from Kohl's!!! Gotta love Kohl's...especially this holiday season as they are giving away one FREE purchases EVERY DAY at EVERY STORE and ONLINE from now til Christmas Eve!!! I LOVE working for a company who helps the community out as much as Kohl's does, esp when they let me give away the free purchase...BEST FEELING EVER!!! BIGGEST THANK YOU TO KOHL'S!!!
Thanks,
M
PS. We got our Christmas pics taken tonight, so be on the look out for them over the next couple weeks!!! They all turned out soooooo cute!!! If you would like a Christmas card, let me know!! I know Lil' Chris likes getting pics of other CF kids too:)