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Monday, November 26, 2012

Last CF Fundraiser of 2012 / CF Update

Join us this Saturday Dec 1st between 10a-6p(the pic above says 1-6, but it's actually 10-6:) at Deborah's Garden Market to benefit Cystic Fibrosis!!!

Thirty-One, Arbonne, BeautiControl, Scentsy, Tastefully Simple, Wildtree, and Paparazzi Jewelry will all be there and have a raffle for Cystic Fibrosis!!!

See you there!! I will be there from 10-1 for a Kohl's AiA event! If we get 5 associates to volunteer, this will put us at $5,000 raised from Kohl's for this year alone!!! WOOHOO!! I still need 3 more associates to sign up, so please pray they come so we get the $500 Kohl's grant!!

As for a CF Update...Lil' Chris is doing well and just finished his Cipro and only has 4 more days of TOBI left...and he is NOT coughing!! Woo Hoo!! He had no problems with either one...PRAISE GOD!! I will be calling the CF clinic tomorrow to schedule an appointment to get another throat culture to see if the Pseudomonas is gone. I will let you know. Pray that the meds worked and he has a normal culture result!! 

Thanks for your continued prayers,
 

Thursday, November 22, 2012

HAPPY THANKSGIVING!!!

Just wanted to say 
HAPPY THANKSGIVING EVERYONE!!!

There is much that I am thankful for, so I thought I would list some;)...
  1. I am sooooo thankful for a God that hears our prayers and answers them!
  2. Thankful that even though Lil' Chris cultured Psuedomonas, he is still very active and happy and doesn't let it bother him!
  3. I'm thankful for a "healthy" year for Lil' Chris even though he started new meds this year, including his first ever nebulizers...Pulmozyme and TOBI.
  4. So thankful that Lil' Chris takes so well to swallowing all his pills, to doing all his nebs, and to doing his Vest EVERY DAY without much complaint!
  5. Thankful that he has Ayla to play with and keep him active;-)
  6. I'm thankful to celebrate Thanksgiving with my in-laws....which means I gotta get off of here and go celebrate, so HAPPY THANKSGIVING!!!!

M

Tuesday, November 13, 2012

Kiddos Update:)

Lil' Chris is still doing GREAT with his TOBI and Cipro!! So proud of him!! He is still coughing a lil', but not like a cold cough, so that's good:) We have switched to doing his Pulmozyme at night now instead of the morning and it seems to be working out okay so far!!

We took Ayla to the doctors yesterday for her cough and stuffy nose that she has had for like 2 weeks(her cough went away for a few days, but then it came back), and she got her first throat culture taken and she didn't even cry!!! GO AYLA!! She didn't cry when she got her flu shot the other day either!! Lil' Chris cried like a baby when he got his and he's 5 and Ayla is only 3!! ;-) LOL I think she was determined to beat her big brother. She said after he got his shot that she wasn't going to cry when she got hers...and she didn't!! She came close, but the tears did not come out! I felt bad for her, b/c you could tell it hurt her and she really wanted to cry:( She's one determined lady though! Just like her momma;)

So today, I got a voicemail from her dr saying that she did not culture Pseudomonas like Lil' Chris, but she DID culture Strep Throat! ARGGGG!! So now she is taking Azithromycin 5ml once a day for 10 days. We were kinda shocked she cultured this, b/c she's been acting fine and has not complained of a sore throat and has just had a cough, except one day she had a lil' fever for a few hours.

Please pray she gets better soon and that it doesn't spread to the rest of us, esp Lil' Chris...he's got enough going on right now.

The kids are soooo excited that their cousins are coming next week for Thanksgiving!!! Only thing is...Lil' Chris has cultured Pseudomonas, Ayla has cultured Strep, and their cousin Nathan has Leukemia. I'm a little worried that they may get Nathan sick, which could turn out very bad for him. So, I sent a message to the CF clinic to see what they think, maybe the meds will work by then??? IDK, we'll see what they say.

Totally bummed that the CiCi's Pizza here in town closed a couple weeks ago:( That's where I did most of my CF fundraisers. Luckily the Alice Noble Ice Arena lets me do CF Education Days there during their after school program. I'm still able to make that an AiA event with Kohl's to get the $500 grant, so that's good!! When one door closes, another one opens:) I thank God that they allow us to do events there, b/c otherwise I wouldn't be able to raise $5,000 from Kohl's each year...btw, just one more event for this year and Kohl's will have donated $5,000 to CF this year alone!!! THANK YOU AWESOME KOHL'S ASSOCIATES!! Last year they did $5,000 too!! I can't remember exactly how much the years before that...a few thousand, I think:) Gotta love Kohl's!!! Speaking of which...I have a Friend's and Family coupon for 20% off starting this Thursday!! If you want me to email it to you, just send me a message or an email:)

Thanks so much for your continued prayers!
M

Saturday, November 10, 2012

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

Monday, November 5, 2012

1st TOBI Treatment Went GREAT!!

Lil' Chris did GREAT with his first TOBI treatment!! I couldn't have been more proud of him! TOBI is something that I have been dreading for years and all he did was giggle through the whole treatment almost:) LOL Once I figure out how to post video's and pics on here from my iPhone, you'll see what I mean;) I'll post it on fb for now.

He surprisingly didn't say anything about the taste! I did get some good feedback from some fellow CF mommas to have him rinse out his mouth afterwards or to suck on some jolly ranchers or something during treatment to decrease the metal tasting. I could smell it even! It created a lot more mist in the air than I thought it would, def more than the Pulmozyme. It didn't seem to take as long as I thought it would either. I wonder if it's b/c we have a very powerful air compressor. We have the Invacare Moblair 50psi. I think it took like 10 minutes, not too bad. I heard it would be 15-20 min.

In my research, I found a really good site that I thought I would share with everyone...http://www.tobitime.com/index.jsp I esp like the video part(Taking TOBI) that shows you exactly how to administer and clean the nebulizer. Very informative!

I'll be calling the CF clinic tomorrow to get all the details.

Well, I gotta get to bed, 4am is going to come pretty quick! I just wanted to update how his first treatment with TOBI went:)

Thanks for the prayers,
M


Bad CF Update:(

I've wanted to post since Fri, but just haven't had the time...and my laptop is super slow and I can't stand it;) LOL

Anyway, after I posted my last blog post on Fri, I called the CF clinic, b/c I realized I had not heard about his throat culture result yet. So of course...I never get to talk directly to the CF nurse, so I had to leave a message and then I had to go to work a couple hours later for the rest of the night. Wouldn't you know, when I got done working there was a voicemail from a CF nurse saying that we should stop the Omnicef and consider continuing the Flonase(we had stopped this b/c he got a bloody nose and didn't seem to need it anymore), and that she wanted me to call her b/c he cultured "something new" and they would like to treat it and it was "not an emergency". So of course we had to wait ALL weekend til they opened back up on Mon(today). Ummmm really?? That's just not nice to make us worry ALL weekend!! Meanwhile, I get a call from CVS saying that he had a prescription to pick up(it was automated and I just thought that it was old or something).

Today at work was just CRAZY and I totally forgot to call the CF clinic....I know...mother of the year award! LOL Anyway, my favorite CF nurse had luckily left me a voicemail, b/c I worked from 6a-5p so they were closed when I got done work. The voicemail confirmed MY WORST FEAR...he cultured PSEUDOMONAS AERUGINOSA:( You've probably heard me refer to this bacteria before...it's NOT GOOD for CFers!! It's a bad bacteria that is hard to get rid of and I think the only meds to help get rid of it are Tobi and Cayston. So once a CFer becomes immune to those drugs, then things really start to go downhill.

They are putting him on Cipro(white pill) 2 times a day and Tobi (inhaled like his Pulmozyme) 2 times a day. So there actually WAS a prescription at CVS...again...mother of the year award;p LOL  I've heard that Tobi tastes REALLY BAD, so not sure how this is going to go over. I guess we'll find out tonight. First I'm gonna call a fellow CF mom to see what order it needs to be done it. I forget. I think it's Pulmozyme, Tobi, then Vest, but it could be Pulmozyme, Vest, then Tobi??? When he takes the Cipro, he can't have any dairy products with it:( He will be on Cipro for 21 days and on Tobi for 28 days.

I don't know a whole lot about Tobi, but from what I've heard, they usually have to do 28 days on, then 28 days off(so like every other month) until he cultures no Pseudomonas 3 times in a row. Please pray that it works the first time!!

You may be wondering where he got Pseudomonas from?? Well, it's a risk we take every time we take him outside our front door. We try not to let CF rule our life, so we let him go to Kindergarten and we take him with us to go shopping, and we LOVE to go on vacations to Disney or water parks, or anywhere fun:) He LOVES them all! So, he could've picked it up anywhere. Pseudomonas also grows in standing water. You know, my biggest fear about him starting an inhaled med like Pulmozyme, was that we wouldn't sterilize it well enough or something, and he would grow Pseudomonas. Again, still unknown how he got it. It could've been from any of the above OR maybe he was around another CFer and didn't even know it??? Like I said, it's a risk we take every day.

I've tried to put a positive spin on it though for his sake. When I picked up the meds, I said "Wow! Look Bud! You get to do TWO nebulizers now!! It's that AWESOME!! And you get to take a new pill too!! YEA!!" ....if only he knew:( :( :( :(

On top of all of this heartbreaking news....he has a sore throat again:( I REALLY hope and pray he is not getting another cold.

I'll try to keep you updated as best I can. I don't always get on the laptop and for some reason I can't blog from my new phone.

Thanks for your continued prayer...it's especially needed now.
M

Friday, November 2, 2012

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