Our Decision on Pulmozyme or HTS / CF Update

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


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

PULMOZYME IS IN THE HOUSE!!!!

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

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

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

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

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

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

TWELVE HUNDRED HOURS

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

Again, thanks for your continued prayers,
M

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Azithromycin / CF Commercial for 2012

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

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


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

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

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

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

Cough and Cold Update

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

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

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

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

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

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

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

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

Thanks for all your prayers and donations,
M

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

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

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

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

CF Update / CF Lungs vs Healthy Lungs

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

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

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

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

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

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

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

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

Things she's doing now...

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

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

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

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

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

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

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

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

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

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I hope you enjoyed the pics and videos,
M