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

MERRY CHRISTMAS!!!!

I hope everyone had a very Merry Christmas!!! We had the BEST Christmas EVER!!! The kids were very entertaining, and I took pics and video until my phone couldn't take anymore:p LOL

Lil' Chris got the drums that he asked for and Ayla got her green Polly Pocket helicopter that she asked Santa for:) She was even soooo happy, that she cried tears of joy when she opened it!!! It was so adorable that it made me cry:)

As I reflect on the day, I'm feeling very blessed to have such a wonderful, happy, "healthy" family!! There are many CF families who spend holidays in the hospital very ill, but Lil' Chris has had a GREAT year until he got a cough and stuffy nose this past Friday. It has gotten worse each day, but we are doing extra Vest and Albuterol treatments to help get rid of it. He recently got a new Vest machine which is really good, b/c it pauses every so many minutes to help him learn to cough in between. This new feature has been very helpful since he got this cough. He has his next CF clinic apt on Jan 8th, so I'm really hoping and praying that he doesn't culture Pseudomonas or something worse.

I wanted to share some good news that a fellow CFer, Piper Beatty, got the call for her 2nd double lung transplant today!! It's a Christmas Miracle!! So happy for her and her family! They are in my thoughts and prayers, as well as the donor family. Please pray everything goes smoothly and she has a quick recovery.

I know it's been a while since I posted last, but you might be seeing me post more often now that my awesome hubby got me a new touchscreen laptop for Christmas!! WOOHOO!!! I LOVE IT!!!! THANKS SO MUCH HONEY!!!!!

MERRY CHRISTMAS EVERYONE!!!
M

Cough/cold update

For an update on the kids colds and coughs...

Both of their colds/allergies seem to be gone. YEA for no more sniffles!!!

As for their coughs, they seem to be gone too!!!! YEA!!!! I think it mainly stopped before the 4th of July, not sure of exact date;) Praise God that our treatment plan worked and Lil Chris' cough didn't get worse and turn into something bad. Anytime he has a cough and doesn't need an antibiotic is good, because he could build up a resistance to the antibiotic, and some of the harsher antibiotics could have serious side effects.

Just because he stopped coughing doesn't mean that some bad bacteria isn't lurking deep down in his lungs. The last time he cultured Pseudomonas he didn't have a cough at all. His next CF clinic appointment isn't for a little while, so we are praying that this cough(even though it went away without antibiotics) didn't produce anything.

Please pray that his next culture comes back normal like the last 2!!!!
Thanks,
M
PS. Sorry for no pic, I tried to post a pic of the 2 of them doing treatments together, but either blogger isn't working properly, or it's my crappy laptop. IDK:( Getting frustrated, but I really don't want to get rid of this blog. It helps me keep track of everything, but I really miss putting pics and videos on here all the time:(

Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

One Cough in 9 Months!!/BEST Culture Result!!

 Some pics of Lil' Chris doing his Pulmozyme and Vest before bed.

I was just looking back on my blog here, and I realized that Lil' Chris has only had ONE cough since he started the Pulmozyme daily!!! Pulmozyme helps thin the mucus. He used to get about 5 coughs a year, and now it has been 9 months and he has only had ONE cough!!! And that's including culturing Pseudomonas 2 times!

 AMAZING!!! THANK YOU JESUS!!!!

He used to always get coughs after a cold, but he hasn't the last few times, including his last cold on 3/7/13!! WooHoo!!

Oh, btw, his last culture came back.....

drum roll please..... 

NORMAL!!!!

WOOHOO!!! 

Thank you all for your prayers!!! Keep them coming, because they are working:)

 M

CF Walk and Fundraisers Update!!!

I got confirmation to go ahead and make another commercial for our Cystic Fibrosis Walk!! WOOHOO!! We LOVE you Clear Picture!!!! Thanks so much for donating this air time and helping us spread awareness about CF and our walk!!!!

I also got confirmation that Domino's will be sponsoring our food again this year!! Thanks so much Vic!! Love me some Domino's pizza, it's the BEST!!!

More great news...Panera Bread is getting more involved this year!! They are not only going to donate bagels, but are going to give out gift cards too and possibly do Pin-Ups and more!!! WOOHOO!!!! Isn't that GREAT news!!!

Denna was able to get The Faithful Little Cupcake to do Pin-Ups for the whole month of Feb!!! That's AWESOME!!! They will be doing them at both locations, so if your in town and want something sweet in the month of Feb, stop by The Faithful Little Cupcake and buy a Pin-Up for $1 or more and put your name on it to show your support for Cystic Fibrosis!!  :) Please help me spread the word!

I've started to set up some fundraisers too. I have one at Alice Noble Ice Arena on 2/13, and an Arbonne Party at my house on Fri 2/22 at 6pm!! 35% of Arbonne orders will go towards a CURE for CF!! Arbonne is a health and wellness company with all natural, safe products...skin care, nutrition, makeup...so many options! I hope you can make it! If so, please email me or leave a comment and I will contact you with my address:) Also, for those who can't make it to the fundraiser, but would like to order, I will post a link and you can still help out CF by ordering even if you live in another state!! :) 

Thanks everyone for all your support for Lil' Chris and CF!!
M
PS. Lil' Chris is still doing great! He has a hard time taking the Cipro still, but at least he isn't hiding them this time;) Please pray that the TOBI and Cipro knock out the bad Pseudomonas in his lungs!

TOBI and Cipro Update

Lil' Chris is doing GREAT with his new TOBI treatment!! I'm so proud of him!! I can't believe we have gone through a couple of packs already! They come in packs of 4. He is doing GREAT taking his Cipro pill too!! 

So far he hasn't said anything about the taste of the TOBI, and he hasn't said that his tummy hurts from the Cipro, but everyday that I have been with him since he started it, he has not gone #2. I've asked him if he has gone, and he says that he doesn't have to. Hmmmm, I'll have to keep a close eye on that, b/c a lot of CFers have problems with this and end up in the hospital being blocked up and sometimes needs surgery or something. The thick sticky mucus in CFers don't just clog up the lungs, they unfortunately clog us other vital organs too:(

When I called the clinic on Tues, the nurse told us that we could switch Pulmozyme to night time, that way we only have to do TOBI in the morning before school. TOBI takes about 13-15 min. Pulmozyme only takes about 6-8 min, but it's just hard, b/c he can't eat his breakfast while he does these treatments. So we are switching to do Pulmo at night. This will give him more time to eat breakfast before school. 

Also, the nurse said to do his Albuterol puffer before treatments to open up the airways. So, the order of his treatments are Albuterol, Vest, TOBI in the morning and Albuterol, Pulmozyme, Vest, TOBI in the evening. Oh and Flonase nasal spray every am and pm:)

Lil' Chris is coughing and has a stuffy nose right now, but it may be from the meds. I've heard that you can get a "TOBI Cough" when taking it, also a raspy voice. His voice hasn't changed yet, but he is having some productive coughs, which is good! He needs to get it out!

Ayla's cold and cough was starting to go away, but now it's back:( I took her to get her flu shot the other day, and I asked if she could be seen for her cough, but they said they didn't have any openings:( So, we bought some over the counter cough medicine to help her out. So funny...the other day I tried to give her medicine in a pill form and gave her a drink, because that's the norm in this house...well, after she took a sip and looked at me like "what do i do now?" I realized she doesn't know how to swallow pills yet;-) LOL Lil Chris has been swallowing pills since he was 2 and she's almost 4 and can't! I'm not used to that! LOL

Chris and I went to a CF Volunteer Appreciation Dinner the other night and it was so Great seeing all our fellow CF parents that we see each year at this dinner! We actually all got to sit at the same table, except Tina sat at the table next to us, b/c out table was full. We heard from 2 Great doctors and they went over the VERY promising drugs coming out for our kids! It may take 5-10 years for the drug to come, so we just have to try and keep our CFers as healthy as possible until that CURE comes, b/c....it IS COMING!!! I CAN FEEL IT!!!
 
I couldn't have made it this past week without the help and great advice from some awesome friends and my awesome fellow CF parents that I have met thru this blog and facebook!! You guys were there right when I needed you the most!  BIG THANKS to Stacy A., Steph W., Alma, Mary, Samantha, Heather V., Angela, Tina C., Kim, Denna, Kirby, Heather L., Leslie, Marjorie, Tina P., Lisa, Rebecca, Erin, Harriet, Abby, Tabitha, and Allison. I can't thank you all enough!!

As I was doing my devotions the other night before bed, I came across this verse.."Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." (John 9:3 NIV) I have FAITH that God will take away this horrible Pseudomonas bacteria in Lil Chris' lungs so that he can grow old and do GREAT things for God!!! Thank you Lord for having this verse in my devotions that night! I really needed it:) I think a lot of parents with CF kids or any terminal disease should remind themselves of this verse daily!

Thank you all for your prayers, and please keep them coming that the meds work and kicks the Psuedomonas out this first round!!

Please keep Tricia in your prayers too, b/c she finally got listed for a 2nd double lung transplant!! It's always riskier the 2nd time, but we have a God that hears our prayers and answers them!! Check out Nate's blog post...http://cfhusband.blogspot.com/2012/11/listed.html
Thanks,
M

CF Update / Pray for Tricia

Thanks so much for all the prayers everyone! 

Lil' Chris is doing MUCH better!! His cough is gone and his nose isn't stuffy anymore!! 

Praise the Lord!!

He still has a lot of pills left for the Omnicef and alot of the flonase left. We've stopped the flonase, but are continuing the Omnicef. Usually when we get the liquid antibiotic it is only for 14 days, but this pill form was for 21 days. I'm just VERY thankful that his cough is gone. 

Ayla's cough is gone too! Her's was kinda bad too. We all got that cold, but are all better now! YEA!! 

I had a procedure done on my toe this past Monday, and it is doing much better so far!! After 1 1/2 months of excruciating pain, I was ready to do anything to make it go away. Unfortunately, I had to stop running everyday, but.....before I had to stop to let my toe heal.....I reached my goal of running every single day for 2 whole years straight!!! WOO HOO!! I missed 4 days b/c the dr said to rest my toe, and I missed one day b/c I had a stomachache and was waiting for it to go away, but then I accidentally fell asleep;) LOL Oh well, not bad for only missing 5 days in 2 years(other than vacations where I didn't have my treadmill;)

Please continue to pray for Lil' Chris. Also please keep Tricia in your prayers still. Her husband Nate said that the dr's told her how close she is to dying. This just breaks my heart! She was the first CFer I knew. I followed Nate's blog religiously... www.cfhusband.blogspot.com. She and Nate were why I started this blog. Pray she gains weight and strength to be listed for a 2nd double lung transplant. I think the reason I connected with her the most, was b/c of her love for the Lord. She always gave praise to God even at her worst times. I admire her sooooo much!! 

WE LOVE YOU TRICIA!!!

Thanks,

M

CF Clinic Visit 10/24/12

Lil Chris had a great CF clinic visit today! Gained about 1 lb, and 1 inch, and his PFT was 97% even though he has a cough right now! Dr prescribed antibiotic Omnicef and Flonase. Thanks for all the prayers and keep them coming as we await his throat culture results. Also, please pray for adult CFer, Tricia, as she is waiting for a 2nd double lung transplant and is having a very difficult time breathing. Her PFT right now is only 15%:( Lord give her strength!

The above was my facebook quick update, now for a more detailed one;)...
Weight was 46 lbs up from 45 lbs 3 months ago, height was 46 1/4 inches up from 45.5, and BMI was 30th percentile down from 47th percentile(dr's like it to be at least at 50). He didn't grow or gain very much, which is why his BMI went down I guess.

He did great when he got his throat culture!! He even coughed in the middle of it which was good, b/c she was able to get some mucous on the swab thing. I couldn't believe how much was on it! Please pray for no bad bacterias. I'll let you know what his throat culture result was when we get it.

He got his flu shot today and was not very happy about that long needle going in his arm. Pretty much cried and wouldn't move his arm til we went to the park to play. lol Good thing they did it at the end of the visit!

He started a cough last Wednesday, so it had been a whole week and it wasn't going away, and the dr said that his nose was pretty gunked up. I asked if she thought it was allergies or a cold and she said a cold. I pretty much figured that since the rest of the house got sick too. So she put him on an antibiotic called Omnicef. He was on this Sept of 2011. I looked back on his cough chart that I keep on the right side of this blog and was surprised that his last cough was in March! Maybe the Pulmozyme is working!! She also prescribed Flonase nasal spray to help clear up his nose. This is the first time he has ever had this. He has to do 2 sprays in each nostril 2 times a day. He did very well tonight when we gave it to him! I was surprised! Oh, and this is the first time he has had capsules for his Omnicef, usually we get the liquid antibiotics. They are huge, but he swallowed it right down like a champ:)


He did great on his PFT too!! His FVC was 97% and his FEV1 was 92% which was down a little from last time. I thought they were going to be way worse b/c of his cough but they weren't! YEA!!


Right after clinic, I did a CF AiA event today which Kohl's gave a grant of $500 for a Cure for CF!! Woot woot!! Love Kohl's and my awesome associates!!
  Thanks again for your continued prayers, M

CF Update / Prayers Needed!!

Thought I'd give a quick CF Update. Lil' Chris is doing GREAT!!! No coughs right now, which is FANTASTIC!!! But, this morning at breakfast, he was complaining of his throat hurting and his forehead hurting. It hasn't slowed him down though, but he wouldn't eat his toast and lots of butter:( I'm hoping and praying it doesn't turn into anything.

He has regular CF clinic check-ups every 3 months, and his next one is scheduled for 10/24. Please pray his lungs are clear, his throat culture is normal, and he does great on his PFT test.

As for the Pulmozyme, he is still doing a GREAT JOB with it!! We do this nebulizer every morning at the start of his Vest. It only takes about 5 minutes, since we have a very powerful machine:) The sterilizing isn't as bad as I thought it was going to be. We wash each piece with soap and water and then put them in a bowl of hot water and put it in the microwave for 6 minutes. Then we take them out and place them on a paper towel to air dry and we put a paper towel over it too.  The only thing is....we sometimes forget it in the microwave and it sits there for awhile, then we have to re-do it. LOL

Remember when I posted about a little girl named Chaia who had heart problems and a rare genetic disease? Well, can you believe it has been 1 year and she is doing Great?! She still has a long road ahead of her, but she is def a fighter! Please keep her in your prayers as well. 

Phennyman could still use your prayers as well. Poor lil' guy has been going in and out of the hospital too much! :(

Tricia, Nate's wife who has CF, has been having a very hard time breathing lately. She is about to get on the list for a 2nd double lung transplant soon, I believe. Please keep her and her family in prayer. Lil' Gwyneth is doing Great, but I'm sure it isn't easy seeing her mommy suffer.

Thanks for all your prayers!
M
PS. I FINALLY got my new iPhone 5, but I haven't figured out how to post pics on here yet from it. As soon as I do though, I'll post the pics and video's from Lil' Chris' first basketball practice. Guess who his coach is?? :)

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 / 1st Christmas Musical

I can't believe it's been since Dec 5th that I last blogged!! Sorry about that:)

The kids and I are all doing great! Our colds are all gone and Lil' Chris' cough is much better. He just seems to cough the most in the morning, but it's not as junky sounding. Once I make him blow his nose, it's not as bad. The other day before school though, he was coughing so much that he threw up 2 times! It wasn't a bad cough though, more dry than wet. Once he blew his nose, he was fine. I HATE THICK, STICKY MUCUS!!! I'm sure Lil' Chris hates it more than me;) lol

We are all ready for Christmas and can't wait!! The kids are VERY excited! I told the kids(mainly for Lil' Chris' sake) that if they finished all 3 meals of the day, then they would get an early Christmas present...so far, they have only gotten one and I started this 10 days before Christmas;) LOL

I sent about 40 Christmas cards out and I wish I could send one to all of you, so here is YOUR card;-)...Merry Christmas!!



On Dec 13th, Lil' Chris had his 1st Christmas musical!! YEA!! He did such a GREAT JOB!! I of course sat on the wrong side of the room, but I tried to get pics and video as best I could with Ayla not sitting still on my lap;) LOL Check out the video below, he is the one all the way to the right in the red shirt. After they sang, they got a special visitor who Lil' Chris just had to go see like every 2 minutes!! LOL I can't believe Ayla actually sat on Santa's lap too!! She even told him what she wanted for Christmas! She wants a pink scooter and he wants a blue jeep, but since then it has changed to a spiderman bike. LOL I think he'll be happy with what Santa got him;-) LOL

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

I hope you all have a VERY MERRY CHRISTMAS AND A HAPPY, HEALTHY NEW YEAR!!!
M

CF Links / Colds / Coughs / Christmas decor :)

Sorry it's been a while since I've posted. You know that cold that the kids had....well, I ended up getting it too unfortunately. It lasted over 2 weeks!!! It was almost all gone after the first few days, but then we went to Kalahari (thank you Oma and Opa for the early Christmas present!!) and walking around outside with a wet head probably wasn't a good idea. Then the next night I had to stand outside in the freezing cold for 2 hours at work for the Black Friday sale working the loooooong line, which I'm sure didn't help my cold go away any. BUUUUUT...it was all worth it, b/c Kalahari was AWESOME and Black Friday was a HUGE success!! I helped lead our store to be #1 in the district and #2 in the REGION!! WOW!!! I even opened 40 credit apps myself!! I was #1 for the day!! It was GREAT!!!

The kids are still getting over their colds too. We are all in the cough stage, esp Lil' Chris. He had the most mucus/snot I've ever seen!! He even threw up, b/c he was coughing up so much! He would blow his nose and it would just keep coming and coming and coming!! Poor kid. He's been coughing a lot the last couple of days, so a call to the CF clinic may be in order soon if it doesn't go away. Extra Vest and Acapella times are a MUST right now!

I bought some kids vapor rub(sorry I couldn't get the pic to work right side up for some reason;) and put it on their chests last night and at first Lil' Chris couldn't STOP coughing! I thought "Oh GREAT! What did I do??" But then it settled down and he slept all night without getting up to cough, PRAISE GOD!!! Ayla too!!! I wasn't sure if CFers could use a vapor rub, so I asked on CysticLife and got some responses that said it was ok b/c it opens up the airways to breathe easier so they can get some sleep. Sleep if very important for CFers, b/c they use so much energy(and calories) when they are coughing all the time. I'm just glad it worked and I'll ask our dr about it too. Thank you to those on CysticLife for answering my question so quickly:)


On a good note...I got all my Christmas shopping almost all done and 95% is already wrapped and ready to go under the tree Christmas morning:) The kids helped me decorate the Christmas tree yesterday, which was a lot of fun:) How do you like our new stocking holder(see pic above;) Daddy finished putting up all the lights outside too! The kids LOVE driving around our development all the time to see everyone's lights:) Thanks neighbors for all your awesome lights!!! :) They look GREAT!!

Below are some links that I have been wanting to post, but forgot about;) It's some good info tho, so check them out!!

Thank you everyone for all your prayers!! Keep them coming that we have a "healthier" Winter and that Lil' Chris' cough goes away soon all on it's own;-)
M

http://www.timesreporter.com/news/x669417231/Phila-native-making-a-difference-for-cystic-fibrosis-patients

http://www.cbsnews.com/8301-504763_162-20129258-10391704/new-cystic-fibrosis-drug-shown-promising/

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/11-2-NEJM-Features-Kalydeco-Study.cfm

http://www.nytimes.com/2011/11/04/nyregion/with-cystic-fibrosis-kevin-dwyer-running-new-york-marathon.html?_r=2&ref=nyregion

CF Clinic Visit / New Acapella / 2nd PFT

Lil' Chris had his 3 month check-up today at the CF clinic and he had some GREAT RESULTS!!! THANK YOU ALL SO MUCH FOR ALL YOUR PRAYERS FOR HIM!!!

-Lungs were clear!!!! WOOHOO!!!!
-His weight has been stuck at 38 for the looooongest time and he finally gained some weight!!! He was 40 lbs and 2 oz!!!! I was completely SHOCKED!!! I actually made the nurse weigh him again to make sure;-) LOL I guess that eating sticker chart really helped him gain some weight!! I know it DID help him to eat more...he now eats pizza and chicken nuggets again!!! YEA!!! I couldn't believe it the other night he ate 2 WHOLE SLICES OF PEPPERONI PIZZA!!! WOW!! That's a first!!
-His height 3 months ago was 42 3/4, this time it was 43.5!!! Next Summer he will def be able to go on all the 46" rides if he keeps this up:)

He did his second PFT today and he did AWESOME!!! He blew a 94%!! Last time I think it was an 83%. He sure did make me proud getting up there and putting the nose thing on all by himself and just blowing away:) He did such a GREAT JOB!! Click here to learn more about PFT's. Ronnie shared some great info on his blog and did a video of him doing one. He is an adult CFer who recently had a sweet baby girl:) She is so adorable!! Congrats Ronnie and Mandi!!

His doctor said everything looks great and not to change anything!! So we are still going to do 3 enzymes before each meal and snack, 15mg of Prevacid each day, 1 Aquadek, Omega 3 + Viatmin D, Vita C, and Vest 2 times a day for 30 minutes each.

As I was asking the doctor all my questions;)lol, I mentioned the Acapella, and next thing I knew, they were bringing one in for him to try! The PT said that they usually start them on it around 5 or 6, but that she would try it with him and see how he did. To her surprise, he did GREAT!!! She said that some 4 year old's don't have the attention span or capability of following the directions, but he definitely did!! WOOHOO!! GO CHRIS!!!

I asked if he needs to do the Acapella after every Vest therapy, and she said not if I think he doesn't need it. It would be a good idea to have around in case I hear him rattling like he needs to cough something up but can't, or if we go somewhere and we can't take the Vest. For after the Vest, he would do 1-2 cycles of 5 breaths followed by 2-3 huff coughs to clear any mucous. If we use it instead of the Vest, then he would do 5 cycles of 5 breaths followed by 2-3 huff coughs. You'll see him do it in the video below.

I wasn't sure how his visit was going to go today, b/c on Monday he woke up with a sore throat and he was still even complaining of one today. The doctor said his throat looked ok though. He doesn't seem sick at all. His nose was runny the last couple of days, but today he blew it only once after his bath! Ayla was a little stuffy yesterday and today, but no hard core cold as of right now for either of them. I'm praying it doesn't spread anymore and that this cold or whatever it is goes away fast, b/c Nathan is coming next week and it would be dangerous for him since he is still on chemo. Pray for a healthy visit and that Lil' Chris doesn't develop a cough from it like he usually does after a cold!! I'll let you know when we get the throat culture result back, praying for a CLEAR result!!

Make a video - it's fun, easy and free!
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Thanks for the continued prayers and please don't forget about baby Chaia. She is doing well, but still has a long road ahead of her. Also, if you could say a prayer for Blake, a 3 year old who had a tumor removed today. He used to go to our church. The tumor was the size of a melon. Thanks so much!
M

CF Update

Remember when I said I thought the kids runny noses were just from allergies??? Well, I'm thinkin they were colds now, b/c I'VE got a cold! Lil' Chris is STILL coughing some pretty nasty coughs. My guess it's from the drainage, b/c he is still stuffy. Ayla has had a little dry cough off and on.

So, I've got my mask on and am trying to stay away from the kids even though they have already had the cold. I really don't want it to start all over with them! It's so hard though, b/c my kids are so lovable. They keep asking me, "Mommy, I want to hug you and kiss you" or "Mommy, I want to sit with you!" It's sooooo hard for me to say "No, Mommy's sick. I don't want to get you sick." It breaks my heart to upset them;(

Lil' Chris is doing GREAT at preschool!! He LOVES it!! He is doing GREAT taking his enzymes before snack time!! Apparently he already has a girlfriend named Josie. All I hear is Josie this and Josie that:) "Josie is cute!" :) Boy do they start young these days;-) LOL!! I guess he takes after his momma;) LOL!!!!

Please continue to pray this nasty cough goes away soon. If it doesn't go away by the time this antibiotic is up, then the CF clinic will probably want to see him. We try to stay out of that place as much as possible, so not to catch any more germs/bacteria!!

Thanks,
M

Yikes, Preschool time already!! / CF Update

Decisions, decisions....:)

I guess we have a winner!!

Ayla had to get one too:) Hopefully she still likes Dora next year;-) LOL

It's official...Lil' Chris is going to preschool!!! We went to his preschool orientation the other night! I can't believe my baby is even old enough for preschool already!! Where has the time gone?!?

It was a very hard decision. I don't care about the money(even though we don't have it;), or that he is my baby, as much as him getting sick. I'm just worried that this may be the start of the decline in his health. I told my husband I just want one more healthy year before he HAS to go to Kindergarten. I originally wanted him to go to preschool, b/c he wasn't catching on with me teaching him his letters and numbers, but lately he has really taken an interest in it and is really starting to catch on! He can even write his name now!! I really think I can teach him and get him prepared for Kindergarten now, whereas before I didn't think that. My husband still thinks we should still send him for the experience. I'm just so worried with all the germs. He went to VBS for 2 days and then church that Sunday and got sick. I can't imagine 3 days a week EVERY week, esp in the cold and flu season!! I'm not looking forward to him getting sick all the time and then have to start on nebulizers everyday like most CFers;( We still haven't paid or anything and can still not send him, but he is all excited about going and has his backpack all packed and ready. How can I say no now?! My gut says keep him home one more year, but I guess I'm going to have to let him go and just pray that he doesn't catch too many colds or any bad germs that could really affect him for the rest of his life. It is a church preschool, so there are a total of 15 kids they said. It is Mon, Wed, & Fri from 9-12. At least it's not all day, I guess. lol. Poor thing is going to have to miss his 2nd day of school already b/c he has a CF clinic appt on 8/24. I may try to get the time changed if I can.

Big Thank You to my sis-in-law for letting me vent to her. I thought I might as well vent on here too;) LOL :)

Another BIG thanks to my fellow local CF moms, Alma and Mary, for giving me some good advice on educating the teachers about CF, and for putting my mind at ease a little bit:) THANKS GIRLS!!!

Look...I can FINALLY fit all of Ayla's hair into a ponytail:) YEA!!! I was sooooo excited!! She's 2 1/2, I thought it would never happen;-) LOL

As requested by Victoria's mom, here is the nose suction thing I was talking about in a previous post. I've seen them at Kmart and Babies R Us usually for about $19.99.

Lil' Chris' cough turned wet after my last post. He is still coughing, but not as much as he was. I'm hoping that it will go away on it's own without any antibiotics like the last 2 coughs. Everyone else is all better, PTL:) Thanks for all the prayers!!

This Tues(8/16) I have another CF Fundraiser at CiCi's Pizza in Wooster from 5-8pm!! Hope to see you there!!

I've got lots more to post about, but house chores are calling me;(

Pray Lil' Chris stays healthy throughout the school year!

Thanks,
M

Cold / Cough Update

Well, I guess it was inevitable...Ayla is sick too with a runny nose and cough;-( My nose was runny a little bit today too, but not too bad yet...it will probably hit me tonight or tomorrow;( Boooooo. Oh well. I hope my hubby doesn't get it or Oma and Opa since Nathan and the boys will be staying at their place next week.

Lil' Chris was so stuffed up today, that he asked to get his nose suctioned...shocked, right?? I know!! Me too!!!!! So I did a little, then he did a little with the lil' ball thingy, then I brought out the big guns(the battery operated thing that sucks out the snot, sorry I know it's gross;) LOL! To my surprise....he did GREAT!!! He was always afraid of that thing!! He just hit the button to play the music and then suctioned his nose, and then I got the rest!! The part he really liked was seeing the snot drip down in the little holder....I know TMI;) LOL Sorry!! I'll stop now, but in the CF world, it's common to talk about all these gross things:) To know that he likes the suction thing is a BIG step for him!! GO LIL' CHRIS!!!! BTW, Ayla tried it herself for a second, but would not let me go near her with it;-) LOL

I guess that's it for now, oh yeah...his cough still sounds mostly dry, but will probably turn into a wet cough soon unfortunately;(

Thank you everyone for all your prayers for Lil' Chris and for Phoenix, his fellow CF buddy. I am happy to report that Phenny is doing much better and is home:) YEA!!! See prayer does work!!!

I'll keep you posted,
M

CF Updates on Lil' Chris & Phoenix

I thought I would give an update on Lil' Chris' cold. His nose has been stuffy all day and he has been coughing quite a bit too. Although it is a dry cough as of right now, it still worries me, b/c it usually turns into a wet one. Yesterday his nose seemed to run more, but today I think it thickened up a bit like it usually does. I think it's b/c of the CF, you know...all that lovely thick sticky mucus;) Gotta love it!

He did a decent job wearing his mask today. I would say he wore it about 50% of the day. I tried getting Ayla to wear one too, and to my surprise she loved wearing it!! I guess it made her feel like a big girl;) I just hope she doesn't get sick too from when he wouldn't wear it, by the end of the night, I noticed her sneezing a few times and sniffling...uh oh:0

Lil' Chris ate pretty good today, so I was happy about that!! It was probably b/c I kept telling him that if he was done eating then he would have to put his mask back on.....so he kept eating;-) LOL!! I should do that more often;) LOL

As for an update on Phoenix...his mom wrote(hopefully she doesn't mind me copying this:) "Positive thoughts, well wishes, and prayers are working! Things are looking better for Phenny Man! Think we may of found the right combination of medicines! Go Phenny Go! (And yes I do mean that literally)" All I have to say is...it's about time the dr's got it right, poor kid!! Please keep praying for both our boys!!! We know prayer works wonders!!

I'll keep you posted,

M

PS. Thank you so much to those who sent Phoenix a card from my last post!! I know it put a smile on his face whether he knew you or not:)

Cold & Cough / Send Phoenix a Card Please!!

Lil' Chris woke up yesterday and first thing he said to me was, "Alya's sick." I said, "How do you know? She's still in her crib!" Then the rest of the day HIS nose was running and he was sneezing a lot. Today he woke up and first thing he said was, "I have a cold." Poor kid;( He was coughing on and off throughout the night and he is so stuffed up. No one else is sick yet, so I'm going to try to keep it that way(like that's possible LOL;) Luckily I asked for boxes of masks last time we went to the CF clinic. I'm trying to get Lil' Chris to wear a child mask today so he doesn't get Ayla or myself sick. Poor kid, I know it's a pain when I get sick and have to wear one for a couple of days;(

Lil' Chris asked to take his mask off to got to the bathroom, and while in there he coughed and Ayla yells, "COVER YOUR MOUTH, CA'S!!" LOL!! I wonder where she got that from?? ;-) LOL

Please pray that he gets well soon and that it doesn't turn into anything worse, and that he won't need any antibiotics or anything. Also pray that no one else catches it, b/c their cousins Nathan, Lincoln, & Tyler are coming this Sunday for a whole week. YEA!! We don't want to get them sick tho, esp Nathan since he has Leukemia and his counts are low, so he is even more susceptible to germs;( We were all planning on going to Cedar Point next Tues 8/9 with all the kids and for our 8 year anniversary:) (WOW!! 8 years already!! Seems like yesterday we were married;-) So pray we are all healthy enough to go have some fun together!! I'm hoping he is all better by his next CF clinic appt on the 24th.


I have one last prayer request...one of Lil' Chris' CF buddies, Phoenix, is sick and in the hospital and could really use some prayer. He is in a lot of pain and the doctors can't seem to relieve it(that's all I can say for now without permission from his Mommy;). GET WELL SOON, PHENNYMAN!!! WE LOVE YOU!! He is loving the cards that are being sent to him. "Family and friends are invited to create and send personalized cards to patients who are currently hospitalized. The card will be printed and hand-delivered by hospital volunteers." All you need to do is go to http://www.childrensmercy.org/patientcards/chooseCard.aspx then choose your card and click "next" at the bottom. Type in Phoenix Entrikin age 3 and they can send him a card from you! His wall of love is growing and I don't know about you, but I'll do anything to put a smile on his lil' face right now:) Please do it, it only takes 2 seconds!! Thanks:)

I'll keep you posted,

M

PS. So far, he hasn't been keeping the mask on;( I have a feeling Ayla & I will wake up tomorrow with a runny nose;(