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 

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!!!

Make a video - it's fun, easy and free!
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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

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

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

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

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

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

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

Cough Update / 1,000 HOURS on Vest / Fair Week pics

Holding hands walking at the Fair....love it:)

Tomorrow it will be 10 days that Lil' Chris has been on this Omnicef antibiotic. I think that was all they wanted him on it for. Well, guess what?? HE'S STILL COUGHING!! It almost seems worse! We've been doing his Vest like 4 times a day too!! He did actually spit a couple of times after coughing!! YEA!! This is what CFers are supposed to do...cough and then spit, esp when doing treatments. The Vest shakes up all that thick sticky mucus in their lungs, and then they are supposed to cough it up and out. I've been trying to teach Lil' Chris this for a long time, but he finally is getting the hang of it...not as much as I would like, but it's a start:)

So anyway, I called the CF clinic to get a refill on the Omnicef. Please pray it starts to kick in soon! This is the first time we have used Omnicef and I'm not so impressed yet.

Tonight was supposed to be Lil' Chris' 2nd soccer practice, but last week AND this week both got canceled!!! Is he EVER going to get to play soccer?!?! LOL! Poor kid was so excited 2 weeks in a row and then was so disappointed:(

Lil' Chris hit another milestone...he has done his Vest for OVER 1,000 HOURS and he's ONLY 4 years old!!! WAY TO GO BUDDY!!!!! I'M SOOOOO PROUD OF YOU!!!!
Above he was at 994 hours, below it was at 1,001 hours. It's kinda weird how it is missing one of the zero's in it though. Is everyone's like this once it passes 1,000??


Lil' Chris and Ayla's 3 fish all died;( They won another fish at the Fair on Monday, but today when we woke up...it had died too;( I guess we aren't very good at taking care of goldfish. LOL! We even bought a bigger fish tank with a filter and everything! I think Daddy was more upset than the kids! He was the one who kept cleaning the tank all the time;) The kids didn't take it too bad. Lil' Chris was kinda excited about flushing it, and flushed before we could even pour the fish in!! LOL!!

I saw this tomato planter on clearance for like $1, so I bought it for the kids to plant the seeds and watch them grow. Here are our tomatoes!! Not sure what we are going to do with them, since it is not the season for them now, but it's fun to watch them grow:)
This week was my hubby's 32nd birthday! HAPPY BIRTHDAY HONEY!! It was also Fair Week, so we went on Monday and then tonight to check out the Demolition Derby. The kids had a BLAST!! If you click on the pictures, you can probably see them better:)

Lil' Chris WISHES he could get this BIG 4-wheeler!!!
"Ayla's PINK 4-wheeler"...everything is "Ayla's pink"...Ayla's pink bus will go to Ayla's pink school, etc...she's a riot!! :) She finally found a Pink 4-wheeler:)

Lil' Chris on Daddy's shoulders watching the Demolition Derby...

Ayla and Lil' Chris' noses were a little runny today. I think it is just allergies, but we are going to keep an eye on them. Praying it's not a cold.

As for me...I'm doing great! Got some great news and I have passed the 300 mark!! I have run on my treadmill for 319 days straight!! The only days I missed was when we were on vacations and I was away from my treadmill!! :) WOOHOO!!! Feels GREAT!! Pretty soon it will be one whole year!!!

Thanks for all the prayers for Lil' Chris,
M

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.”

CF Update / Vest Question / Halloween Pic

Sorry it's been so long since I have updated this blog. Life has been crazy at work... we had inventory, and we've been hiring like crazy!! When I'm at home, I just want to relax and enjoy the kids:) Also, since watching 7 year old Conner and other young CFers pass away recently...it puts things into perspective that I need to spend as much time with Lil' Chris as I can and savor every moment, not spend it on the computer(no offense;) Don't get me wrong, I'm still going to update, just not as often.

Since I have updated last, I have had to order ANOTHER set of hoses for the Vest!!! Good thing they make it easy and they come the next day, otherwise it would be a HUGE pain! Does anyone else have this problem with the new color washable Vests??? Also, the velcro on the shoulder straps don't stick very well. I know of only one other CF mom who has had the same problem....does anyone else have that problem??? Just curious, b/c the last time I had to order hoses, I asked them if they get a lot of complaints about these 2 things on these new Vests, and they said no.

Last Thursday, Lil' Chris and Ayla got their flu shot. It has the H1N1 in it as well this year instead of them having to get 2 shots, so that was nice. Lil' Chris was complaining about his leg hurting after the shot and would barely walk on it. Once I took the bandaide off he was fine;) LOL! Also, we all 4 got our hair cut too! Yup...that's right...I said ALL 4, including Ayla!! It was her very first hair cut!! Well, to be honest it was more like a bang trim, but it's still cutting some hairs!! ;-) LOL! I didn't want to cut the sides or back, b/c she is a girl and I want it to grow out. Her bangs were getting into her eyes, so those really needed cut! She did a great job! She wouldn't sit by herself, but neither would Lil' Chris his first time;) The girl gave her a lollipop and she was good to go!! :)

No other news to report, which is GREAT!! No one is sick and Lil' Chris' cough went away with that last round of Augmentin, thank God!! Please pray we have a healthy Fall and Winter! If I forgot to mention...his throat culture came back the same as last time, nothing to worry about for now, PTL!!

Lil' Chris can't wait until Halloween!! He keeps talking about it:) We got their pics done the other day, so here is one of them...
Hope you all are doing well!!
M

Update on Everyone and CF Question

Lil' Chris' antibiotic ended on Monday and he STILL has a lil' cough! He doesn't cough all the time, just once in a while or when he is crying. Problem is...it should be gone or at least not still junky sounding. I knew I should have asked for the usual 21 days instead of 14 days of the Augmentin!! Lesson learned...bad part, is that his LUNGS are the ones suffering;( I was debating all week whether to call the clinic or not, but I wasn't sure b/c like I said...it's only once in awhile. Well, today I took Ayla to the pediatrician and I had to take Lil' Chris with me unfortunately(we try to keep him out of the dr.'s office as much as possible, but my hubby had to work and the sitter was busy). Anyways, their dr. heard him cough and she thought it was junky sounding too. I felt better when she said that, b/c now I know it's not just me! She suggested to keep an eye on him this weekend and if it's not better by Monday to give the clinic a call. So that is what I'm going to do. Do any other CF mom or dad's out there have any advice?? Has this happened to your child before?? What did you do?? How about any adult CFers??

I got a call today from the Dietitian at the clinic and she suggested to continue doing 1 scandishake a day and also add this new juice. I forget what it is called, but it comes in apple so I'm hoping that he will like it. He HATED the Breeze juices. I'll let you know when we get our order in. BTW, we got approved for BCMH again for another year!!! YEA!!! I don't know what we would do without this secondary insurance for him! It pays for EVERYTHING!! His enzymes alone cost $1 for each pill, and he takes 3 with every meal and snack, so that's like $15 EVERY DAY!! We got approved for "formula" again too....that means his scandishakes and this new juice thing are covered. Thank God for BCMH!!

Ayla's visit went great!! She unfortunately had to get 2 shots in her legs;( She's a fighter though! She ripped the bandaide off as soon as she stood up! lol

My ankle is still the same....wish I had better news. It is still swollen around the ankle bone and I can't move it from side to side. At least I can walk ok with it now:) I've noticed that I can't walk in grass...apparently it's not flat. I never realized how uneven grass was before!! I DEFINITELY can't walk up a hill....found that out the hard way!! LOL

As for Lil' Chris' cousin, Nathan, who was recently diagnosed with Leukemia...he is home and doing well! He had to go get his chemo today and some shots, but is home now and I hear that he is eating my sister-in-law out of house and home:) So glad he is gaining back the weight that he had lost before his diagnosis! The steroids apparently make him hungry and he is loving the Danimals that Lil' Chris loves too:) I wish they lived closer. I know that this is going to give them a special bond as they grow old together....and I KNOW they WILL grow OLD together;-)

Please continue to pray for Nathan and Lil' Chris.

Thanks,

M

Sprain and CF Update

Well, today has been interesting!! My husband had to go to work today, so I was left alone to take care of my sprained ankle and our 2 wonderful lil' kiddos. Lil' Chris has been a big help by getting things for me when I ask him to...what a lil' sweetie pie:) Ayla has been good too by listening to me when I tell her "no, get down" or "no, don't touch". The hard part has been getting up to feed them or change them or put them down for naps and get them up or when Lil' Chris asks for something as soon as I sit down on the couch. I'm managing though and keep testing out my foot by putting more and more pressure on it. I definitely can't walk on it normally yet, which scares me b/c I HAVE to work tomorrow. I'm the only working that knows how to close down all 14 registers! I may have to use the store's wheelchair...LOL!! How embarrassing that would be!! It's a lot less embarrassing than if I were to bring in my Granny walker!! LOL!! I gotta say, that thing has come in handy though;) Thanks Honey!!

Poor Lil' Chris, he still has not been acting like himself today. He didn't throw up anymore yesterday, but he still didn't eat anything and kept acting tired. He is doing the same thing today, but he keeps complaining of a tummy ache. He is down for a nap right now, but all I keep hearing is him coughing. Poor thing. I guess it's time to call the CF clinic for another antibiotic. It feels like he just got done taking an antibiotic!!

I think Lil' Chris did catch our colds. I have noticed that the last couple of colds he has had have been kinda like this. I guess his mucus is getting thicker or something as he is getting older, b/c his nose doesn't run like a faucet like most people's do the first couple of days of a cold. His gets all stuffy and seems to run down the back of his throat. Poor guy;( It always seems to end with a cough too! Does any other CF mom's kids or adult CFers get like this too??? Please let me know.

M

PS. How do you like the new Header Pic??

Applebee's CF Fundraiser TONIGHT 4-9pm / Q & A

Click on the flyer below and print it and bring it to the Wooster Applebee's TONIGHT 5/12 anytime between 4pm and 9pm and then 15% of your bill will go towards a CURE for CF!!!

I got a great question today, so I thought I would share the answer with everyone in case anyone else was wondering;)...

Question from Christine from CF Momma:

Did you set up the Applebee's Fundraiser? I would like to know how you go about getting all these great fundraisers for next year. Or maybe even this year.

Answer:

Yes, I set up the Applebee's fundraiser and I set up all my CF fundraisers. It's actually really easy to set one up:) All you have to do is call or go in, and ask to speak with the manager. Then ask the manager if they do any fundraisers to help out the community. If they do, then they will either ask you what date you would like to do one, or they will give you a paper to fill out first and you can write the dates when you would like to do one. They will let you know if they already have one booked that same night or not. So you know, you usually need the 501c3 tax ID number. You can get it by calling your Great Strides Chapter. Then they will ask who to make the check out to...Cystic Fibrosis Foundation. Sometimes they ask for the mailing address, or you can just pick it up and then send it in yourself, or turn it in at your walk.

Then it's up to you to pass out the flyer that they email you. If you don't print them and pass them out or share them through email, then you won't raise as much money. I've been told that the best way to spread the word is on Facebook...from my experience...this IS true!!! That's why I LOVE it when my friends repost my flyers or the info about my fundraisers, b/c I don't have too many fb friends from this area since I'm not originally from around here. So thank you everybody who reposts them:)

Some places that I know of that do them are: Applebee's, Friendly's, Max and Erma's, and CiCi's Pizza. Every area is different though. I have heard of Bob Evans and Buffalo Wild Wings doing them too, but the ones in our area don't do them.

So you know, you can search online at the restaurants in your area to see if they do any community fundraising. That's how I originally found out about some of them.

Also, you don't HAVE to do all your fundraiser BEFORE your walk. You can do them after and just send the money to your chapter. Just don't forget to put your team name on it;) What I do, is I have the restaurant send the check directly to my Great Strides chapter, and then I put all the tips and raffle money in my checking account and then make an online donation to my Great Strides page. It's easier then making out a check and sending it. Plus it shows up on your Great Strides page quicker;)

I hope this helps someone in someway:) Let me know how you make out!

If anyone else has any questions for me, just let me know and I'll answer it soon:)

M

33 month CF Clinic Visit was GREAT!!! YEA!!!

A glimpse into our CF clinic days....

Photo and video editing at www.OneTrueMedia.com

Well, I guess my sleepless night was all for nothing;) Lil' Chris had a GREAT CF clinic visit today!!! His weight was up 2 lbs!!! Yes, 2 lbs in 3 months!!! I couldn't believe it when she said he was 33 lbs!! I thought for sure his weight would be bad, but I guess all those scandishakes REALLY saved us...phewwww!!! His height was 37 3/4!! Wow, he is growing like a weed!! Both his weight and height were in the 75th percentile......that's right.......75th!!! :) I almost dropped to the floor when Dr. K told us that! I don't think he has ever been in the 75th percentile for weight! I'll take it though!!! His BMI was 55%. They like it to be above 50, so we are all good there too:) YEA!!

This visit was awesome, b/c we got to tell Dr. K that he can do some great new things:) I think he was very impressed when we told him that Lil' Chris is potty trained(except for night time), and that he can take 3 whole enzymes all at once with liquids!! YEA!!

Can I just tell you how AMAZING my son is?! He wore his mask the WHOLE time in the hallway to our room, and then the WHOLE time during getting measured and weighed in the hallway, and then the WHOLE time afterwards to the car!!! I was shocked!! I know I practiced it with him a couple of days before, but I wasn't really sure if he would do it or not. He didn't even give us a hard time about it!! He was such a good boy! As we were walking down the hallways...I was walking behind him and just started tearing up I think for different reasons....

1. I was SOOOOOOO PROUD of him! I couldn't have been ANY prouder!
2. He is getting so big.
3. Just the fact that he HAS to come to a hospital EVERY 3 months for the rest of his life, and how this is just the beginning of many, many, many times of having to wear a mask;( ;( ;( I guess it just hit me. We CF parents get that every now and then.

As for all my questions for Dr. K....

1. He doesn't recommend doing the pill form of Augmentin(antibiotic that we usually use), b/c they are HUGE!! He said they are like horse pills. So, for now we will just stick with the liquid antibiotic. Plus...Lil' Chris LOVES the taste of it;) It's like a special treat for having a bad cough;) LOL That shouldn't be funny;0
2. The bumps on his arms could be the start of eczema...that stinks.
3. He hasn't heard of the white palms thing being related to CF. Still not sure what it is.
4. I got our paper for CF Services Pharmacy filled out...does anybody else use them, they give a percentage to the CFF for a cure?? If you go to www.CFServicesPharmacy.com you can print the coupon for each of your 4 visits(once every 3 months) throughout the year, and then you will be entered to win a $50 gift card for each entry....and then a $100 gift card if you go to all 4 visits and get the coupon filled out each time:) I think it is a GREAT incentive to help make sure that no CFer skips any visits just b/c they are feeling good at that time. It's still important to go every 3 months!!
5. Hang onto your seat folks, b/c here is some GREAT news.........Lil' Chris is getting the new Blue Vest!!! YEA!!! It is machine washable!! It has an outer shell that can come off and can be washed in the washing machine!! Where was this thing when Lil' Chris was 11 months old???? At least the new CF moms will have it :) He is upgrading to the Medium. He measured at 22 inches, and the medium starts at 23 inches, so they said we can try it and he'll grow into it:) They said to give the old one away or just throw it out.

It was sad saying goodbye to Dr. K;( He was the one who told us that Lil' Chris had Cystc Fibrosis. I think he is like the only person I have ever cried in front of. He was a sweetheart, and handed me some tissues. That's got to be a rough job telling a family that their kid has a life threatening disease. He did a great job and was there for us every step of the way answering all my million and one stupid lil' questions;) "Thank You, Dr. K for taking such good care of our Lil' Chris!! Good luck with your move!! We'll miss you, it won't be the same without you!"

So another good visit under our belt. Dr. K said we are doing a great job and to keep up the great work! He doesn't want to change any meds or anything....YEA!!! Praise the Lord!!

Our next visit is the BIG ONE...the annual visit!! Dun dun dun....;) lol It is usually always near his birthday, so this year it is on June 16th. He will have to get blood work, x-rays, throat culture, and the works, and we are usually there for 3-4 hours!!! The nurse said today that the kids there don't usually do PFT's until they are about 6...so we got some time there;) I don't think I'm ready for those yet;-) lol

Thanks for all your prayers, and for all your continued prayers for Lil' Chris to keep going in the right direction:) I'll let you know what the throat culture result is when I find out.
M
PS. He finished his Augmentin and his cough is completely gone...Hooray!!! :)

Lil' Chris' BEST Milestone EVER!!!

Guess what Lil' Chris did today???

He swallowed his enzymes whole with MILK!!!!

I can't believe it!!! I was sooooo excited, I gave him a big hug and kiss and lots of high-5's:) I'm so proud of him!! 2 1/2 and taking his enzymes with liquids!! Hopefully we can keep this going. So far he did it for lunch AND dinner!! The real test will be if he will do it all day tomorrow;)

Lately I have been getting my question answered on this topic on www.CysticLife.org I was very grateful for all the responses I got. I didn't realize how many other moms feel the same as me and are going through the same thing! I hope it works for them too:)

How did I get him to take his enzymes without applesauce??
I took the advice from some new friends on www.CysticLife.org and some of my blog readers and tried the "big straw method!" I used a straw from McDonald's(their straws are really big and wide) and pinched the straw in the middle and put an enzyme in there and then told him to drink! He didn't get it on the first try, but it didn't take long before he swallowed it right down!! I was shocked!! He would NEVER put an enzyme in his mouth without applesauce or some kind of baby food before. (I think he didn't like how it would get kinda sticky once it got a little bit wet.) For the second enzyme that I tried with him, I pinched the straw closer to the top so it could come out easier. At first he was hesitant, b/c he could see it. Then he came around and tried it and it came right out and he swallowed it down like a pro!! What a big boy he is now!!

You have NO IDEA what this means for us!! NO MORE APPLESAUCE!!! YEA!! Oh darn...I just remember that we just ordered a ton of those applesauce pouches. Oh well, maybe Ayla will eat them;-) It's a good "healthy" snack for her and VERY easy on the go;) But YEA I'm still so happy no more applesauce!!

This means....
No more buying the big huge containers of applesauce.
No more spinning the big container open, turning it upside down and shaking it to get the last little bit out, pouring it into a little bowl, putting the enzymes on top, getting a spoon, and then WASHING it all for the next feeding. Most importantly....NO MORE DOING THIS 5 OR SO TIMES A DAY!!!!!!!!
No more worries if we are running low on applesauce.
No more worries if we forgot to bring applesauce with us when we go out.
No more worries if we forgot a spoon(with the pouches he didn't need a spoon which was nice).
No more ordering the applesauce pouches.
No more applesauce spilling in the diaper bag or anywhere, why?????...becaaaaause...

NO MORE APPLESAUCE!!!!!!!!!!!

Can you feel my excitement??? :) I'm sure other CF mom's can relate;)

So for now, we just have to make sure we always have a large straw with us;-) Next step....NO STRAW!!! He can do it!! He is one step closer now:)

I'll let you know how he does the next few days:)

BTW, I am now addicted to not only blogging and facebook, but www.cysticlife.org too:) I LOVE IT! If you are a CFer or a CF parent and you haven't checked it out yet...what are you waiting for??? I've learned so much in just a couple of days than I have in the past 2 1/2 years!! Click one of the blue links above and check it out TODAY!!
M

CF Update & Stuffy Nose

Lil' Chris has been doing much better! Thank you everyone for all your prayers:) His cough is all gone, except he does cough sometimes when he is doing his Vest(that's not a bad thing though;) We are still waiting on his throat culture results.

My next dilemma...
For the last few days or maybe even a week now, his nose has been really stuffy. It isn't runny, just stuffy. He will blow for us, but it never seems to be clear. I'm not sure if it has anything to do with his CF or not. I know CFers are prone to get nose polyps, but I don't think that is what he is getting. Although he does have some bloody boogers once in awhile. Is this the start of getting nose polyps??? What are symptoms of nose polyps?? I've seen a pic of what they look like on someones blog or caringbridge site once(I think it was Aidan's), and I don't see those in Chris' nose. Maybe he just has a stuffy nose or maybe allergies, IDK. I wish it would go away though, b/c he can't breathe through is nose barely at all. His lips are getting so chapped, b/c he has to breathe through his mouth all day and night.

Any CFers or CF moms have any insight on this??
Thanks,
M