CF Update-Cold and Cough:(

Last weekend, we all got a cold, and now we all have a cough:( Poor Lil' Chris coughed his head off all day yesterday. A wet/dry cough. We tried everything...Albuterol puffer, Mucinex, Pulmozyme, Vest, Acapella, manual CPT, Vicks Vapor rub on his chest and feet to help him sleep last night(thanks Nancy for the reminder, I totally forgot we had that:). I felt so bad, he just couldn't stop coughing. At one point I started counting in between coughs to see how high I could count...I only got to 17 seconds:(

Luckily, he finally fell asleep last night and was able to sleep through almost the whole night. Of course, he woke up coughing again though, not as often, but still a lot:( I know the CF clinic won't give him an antibiotic unless he's been coughing for a few days to a week to see if it will go away on it's own, b/c they don't want him to become immune to the antibiotics. So, if he's still coughing by Monday, I'm calling to get an antibiotic. Hopefully his cough will be gone or hopefully the clinic will be good and prescribe an antibiotic ;p

Normally when he gets a bad cough they tell us to up his Vest from 2 times a day to 3-4 times a day...kinda hard when he is in school from 9-3:30. I know some parents who take the Vest to school and do treatments there during lunch or something, but I don't know how he would respond to his class mates seeing him do his Vest. So we will just have to do Vest before and right after school and then right before bed. So that's 1 1/2 hours each day, poor kid. Luckily he has been in good spirits. He goes along playing and laughing like he's not even coughing! I don't know how he does it!! I was coughing a lot at work and it gave me a headache and I felt miserable:( Ayla was the first one with a bad cough and she was put on Azithromycin for 5 days.

Please pray that his cough goes away soon and doesn't do any permanent damage to his lungs. Just yesterday the FDA approved expanded use of Kalydeco for 8 more mutations!! None of them are his mutations, but...this means they are getting closer and closer:) WOOHOO!!! We just need to keep his lungs as healthy as possible until they get it approved for him!!! http://www.cff.org/aboutCFFoundation/NewsEvents/2-21-FDA-Approves-Expanded-Use-of-Kalydeco-for-CF.cfm

I also just got some GREAT news from a fellow CF mom which totally made my day!!! So, despite everything that's going on with Lil' Chris' lungs right now, I have so much HOPE for his future:)

Thanks everyone,
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

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. 

1st Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
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!!!

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

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

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

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

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

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

June 9, 2011

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

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

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

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

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

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

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

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

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

CF Update / Positive Results for VX-770 Study!

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

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

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

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

Phase 3 Study of VX-770 Shows Positive Results

February 23, 2011

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

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

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

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

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

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

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

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

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

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

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

Cough Video / $125 CF Survey

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

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

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

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

Photo and video editing at www.OneTrueMedia.com

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

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

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

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

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

Lil' Chris' First Ear Infection;-(

Last night was a rough night.

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

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

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

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

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

Thanks for all your prayers,
M

Santa Pics / Cookies / Snow / CF Update

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

My lil' Mrs. Clause;)

They are getting so big!!

Lil' Chris giving Ayla a hug:)

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

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

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

Cool roller with different cutouts on it...

Decorating them with markers....

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

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

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

M

Ayla locked us out / Bad Night / Potty training

So, my lovely 1 year old locked us out of the house tonight! We were coming home from Oma and Opa's and I took Ayla into the house, put down my purse, and went back out into the garage to get Lil' Chris out of the van. When we went to go back into the house, the door was locked!! Ayla had locked the deadbolt! If I had my purse, I would have had the key, but I took it in when I took her in! Luckily I had my phone in my pocket, so I called Chris to come home. I also called a neighbor to come help us. Thanks Andrea and John for all of your help!!

After about an hour, Ayla was spent and said she wanted to go "night night." Since she didn't have her blankie, she took off her jacket and curled up on the floor with it in front of the front door and started sucking her finger. I tried to get her to get up to continue to help get the door unlocked, but she wasn't having it. She did a good job though the whole time. She stayed in the foyer where I could see her through the front door. She cried a couple of times b/c she wanted me to hold her. So at 9pm, I finally called the fire department and they came and couldn't get it. Then a police officer came and tried it and he was able to get it open!!! YEA!! I gave him a BIG hug and told him I loved him;) LOL!! I was just glad that Ayla was fine and that we didn't have to break a door or window to get in.

As for an update on Lil' Chris...He is still doing great!! One more day of November and still no cold, cough, or antibiotics YEA!!! We officially broke the curse of an antibiotic every other month in 2010 WOO HOO!! Now lets see if we can go all December too;-)

A couple of nights ago, Lil' Chris was up for about 3 hours throwing up off and on. We think he may have had some soy protein, b/c that is what usually happens when he has anything with soy protein in it. He was fine the next day though.

On a good note....Lil' Chris has been doing GREAT with potty training at night and nap time!!! His pull-up was only wet like 2 times all last week!!!!!! That's morning and nap time that he has been waking up dry!!! I can't believe my lil' 3 year old isn't so little anymore...but I sure am glad not to have to change sheets anymore, esp now that he has a full size bed;-) LOL!!!!

I hope everyone had a Happy Thanksgiving, we sure did!! Please continue to pray we make it through cold and flu season with no problems!

M

Bad Night / Good Day

The kids(meaning Lil' Chris, Ayla, Chris, and our friend Spencer;-) got to meet Sponge Bob the other day at Panera Bread. We LOVE Panera Bread, especially since they supplied a TON of bagels for our walk for CF last year;-)

Lil' Chris didn't have a great night last night. He ended up coming in our room around 1:15am. He came to my side of the bed and wanted me to put him back in his bed. This isn't new, b/c lately he has been doing this b/c we are trying to potty train him at night time. I've been getting up to put him on the potty in the middle of the night, and now he wakes up by himself and comes and gets me, but he sometimes won't go on the potty, he just wants to go back to bed. I think it's b/c it's too late. At least he is waking up though and realizing it!

Anyways....last night I put him back in bed, and then about 5-10 minutes later, he came back to my side of the bed and BAM!! He threw up all over my side of the bed and floor before I could grab the trash can!! I thought he was going to be up all night throwing up like he used to when he was little, but he went back to bed and fell right to sleep for the rest of the night. He has been acting fine today, thankfully. It must have just been something he ate yesterday???? IDK, but today it's 61 degrees and beautiful outside, so we had a lot of fun at the soccer fields running around and kicking the soccer ball!! We were going to go to a Kohl's A-team event, but I didn't think he should go just in case.

The dietitian from BCMH came to our house today and said that Lil' Chris is doing GREAT!! His weight is 35.8 and his height is 40!!! He is in the 95th percentile for height and 75th for weight!! YEA!! She gave me some titles of a couple of children recipe books to order. Hopefully he will start eating more different foods soon, so it's not always just hot dogs or lunch meat or french fries.

More good news....The Cystic Fibrosis Foundation has teamed up with Warner Home Video and CVS Pharmacy again this year!! They are donating $5 for every DVD purchase of one of these holiday movies to the CFF:

-"The Polar Express"

-"How the Grinch Stole Christmas"

-"The Year Without a Santa Clause"

-"Charlie Brown's Christmas Tales"

I went to go buy The Polar Express today, but our CVS was all out...hopefully that's a good sign!! Please spread the word!!

Thank you all for all of your prayers!! Please continue to pray that we all have a very healthy Fall and Winter:)

M

Sprained Ankle / CF Update

Last night we got back from our vacation to go see all of our family and friends and for an awesome 4th of July party! Thanks Nancy and Al, we had so much fun on the 4th!!! I'm still uploading pics from our trip, so I will post them soon. For now, I will update you on what has unfortunately happened since we got home last night...

I was watching the kids play outside while my hubby was unloading the truck...he says I pack enough for a whole month instead of a week;) LOL So when he got done, I started to bring the kids inside because it was getting late. We went in through the garage like we usually do, and I stepped onto the first step(there are only 3 steps) and tried to lift Ayla into the house, but our door doesn't stay open and it was flinging back, so in order for it not to hit her, I stepped up on the second step to catch the door with my elbow and then I lifted her under her arms into the house. Then I went to turn around to get Lil' Chris and that's when I guess I forgot that I went up that extra step to catch the door and therefore I practically missed the last step. My left foot was turned sideways and caught the edge of the bottom step and then rolled and, well......I rolled with it;) LOL

I looked down in pain and saw that it was already swelling up. I didn't want to go to the ER, but my hubby convinced me and when our sitter got here, we went. Luckily it went pretty quick! We got there at around 10pm and were home before 11:30pm! I'm starting to get a little too acquainted with our ER. First, my miscarriage, then when my hubby popped his shoulder out, then my lil' nephew with an asthma attack, and now this!! That's a lot in just 4 years!!

Anyways, they took me right away, and then I got x-rays really quick, and then went to my room to wait for the dr. He said that it wasn't broken, but it was a sprain. He gave me an aircast to wear until I don't feel pain anymore . He said that I should be okay to go to work on Saturday, but I haven't been able to put any pressure on it yet, so hopefully tomorrow it will get much better. It is already bruising all over. Hmmmmm I wonder what shoes I'm going to wear to work;0 LOL The pic below is my aircast. Don't you just love the sock they gave me??? LOL It has non-stick treads on BOTH sides!!! Special;-) LOL

I have to say, Lil' Chris has been very good about supporting his Momma;) He saw the whole thing happen and started crying saying "Mommy?? Mommy??" It was so cute that he was worried about me. When my hubby helped me to the couch, he came over and told me that he would blow on it. I said "Ummmm okay???" with a puzzled look on my face. Then he went over to my propped up foot and started blowing on it to make it feel better;) Too cute! Not sure why that would make it feel better, but it's the thought that counts;) Before I decided to go to the ER, I tried to stand on it and when I stood up, Lil' Chris thought that I was standing on both feet and started jumping up and down saying "Mommy's foot is all better!! YEA!!" It was so cute, I hated to disappoint him;(

As for now, I'm am staying off my feet since my hubby is home today. Tomorrow I will have to take care of the kiddos all day, so that will be interesting. I'll let you know how it goes over the next couple of days.

As for a CF Update, this morning when Lil' Chris woke up, he was not himself. He was acting really weird and tired still. The tiredness is understandable since he didn't really get any naps all week while we were on vacation. He wouldn't eat anything and spit up a little bit and kept asking to go back to bed, so he did and fell back asleep for a while. Then he woke up and threw up and then went back to bed AGAIN! He didn't really get up until about 3pm. We did his Vest even though we were worried he might throw up again, because throughout the night and this morning he has been coughing a lot. We think it might be because we had a fan on in his room b/c it was hot in here. Does anybody else have that problem with their CF kid?? He hasn't thrown up again yet, but he still is not acting himself or eating, and he keeps asking to go back to bed, but hasn't gone back to sleep again yet though. I think he might be catching my cold. Ayla and my hubby already did;(

I'll keep you posted. Please pray for all of us to heal quickly.
M
PS. My hubby bought me a $10 Granny walker, I guess he got tired of giving me a piggyback ride to and from the bathroom;) LOL At least now nobody has to buy me a walker or cane on my 50th birthday!! =) LOL The kids are enjoying playing on it:)

HAPPY FATHER'S DAY!! / Rough Night;(

HAPPY FATHER'S DAY, DADDY!!!

WE LOVE YOU!!!

Love,

Lil' Chris & Ayla:)

I hope all the great Father's out there have a wonderful day today!!

HAPPY FATHER'S DAY TO MY DAD, MY FATHER-IN-LAW,

AND TO MY HUBBY!!

You guys are the BEST DAD'S IN THE WHOLE WIDE WORLD!!

WE LOVE YOU!!

Love,

M, Lil' Chris, & Ayla

Unfortunately my hubby's father's day didn't start off on the right foot today;( Lil' Chris woke us up at about 3am and was throwing up on and off until about 6am;-( Poor kid;( I feel so bad, b/c I think it was my fault;( He had a scandishake at dinner and then before he went to bed, he asked for another one. At first I was hesitant, but then I gave it to him anyways thinking the more calories the better, right?! Well, I should have gone with my gut and not given it to him, b/c that's A LOT of calories in a short amount of time. Poor kid, I felt so bad for him and for my hubby since it was father's day and he was up early and cleaning up throw up. Sorry honey;( At least I have a cool present for you later;) I love you guys!!

M