CF Med List Expense/BCMH Approval!!!

GREAT NEWS!!!!!

WE GOT OUR APPROVAL LETTER IN THE MAIL FOR BCMH(Lil' Chris' secondary insurance)!!!! WHOO HOO!!!!!

It's a good thing too, b/c the same day we got his approval letter, we also got a statement in the mail saying that his $1,500 for 2 of his meds was paid for!! Praise the Lord!!!

I found this cool price list for most CF meds...https://www.cfservicespharmacy.com/ProductsandPrices/

Check it out to see how much you/your child's meds are without having to rummage thru all your bills and statements:)

Here is a breakdown of Lil' Chris' meds...

Enzymes=Creon 6,000= 5 with every meal, about 25 per day=$1,200 for 30 day supply

Prevacid=once daily=$250 for 30 day supply

Aquadeks=once daily=$42 for 30 day supply

Pulmozyme=inhaled once daily=$2,700 for 30 day supply

Albuterol Puffer= (was not listed)

Flonase=$102

When he cultures Pseudomonas, he has to take the following...

Cipro=$530 for 30 day supply

TOBI=twice daily for 28 days=$8,000 

TobiPodhaler=$8,000 (this just got approved, so he may take this next time he cultures Pseudomonas instead of TOBI, b/c it cuts treatment time down by about 40 minutes per day. I was surprised to see it costs the same as TOBI)

He also takes Claritin daily too, which is not listed b/c it's for his seasonal allergies. Not sure how much it is, but our insurance and BCMH covers that also thankfully. I think it's around $40.

So, our grand total for just one month without TOBI and Cipro=$4,334

Grand total with TOBI and Cipro=$12,864

Grand total for one YEAR without TOBI and Cipro=$52,008

Grand total for one year with TOBI and Cipro every other month=$103,188 

WOW!!! CYSTIC FIBROSIS IS EXPENSIVE!! 

SO THANKFUL FOR BCMH!!!

I don't know what we would do without it!!

THANK YOU BCMH and THANK YOU LORD FOR ANSWERED PRAYER!!!

My advice to other CF families is to get with your CF clinic's social worker to find out about any other financial assistance programs your area might have. BCMH is for my state, but your state may have something similar. Also, even if you think you may make too much and won't get approved...just apply anyways. It doesn't hurt anything by applying. You never know, you might get approved anyways, b/c of how serious a disease CF is! If you get denied one year, apply again each year. Like I said, it doesn't hurt to try...your effort will pay off once you get approved:)

Please pray that we continue to get approved each year as you can see the impact it has on our family.

Thanks,

M

PS. Lil' Chris is doing GREAT! NO COUGH!! THANK YOU JESUS!!

TOBI/Cipro Update & Reading!!!

Lil' Chris finished his Cipro the other day and only has a couple more days of TOBI left! YEA!!!!!

He still is doing GREAT and doesn't even have a cough or anything!! You would never know by looking at him that he has some bad bacterias deep down in his lungs just looking to cause some major trouble.

It was rough this 2nd time around with the TOBI, b/c for some reason it took longer to administer than the last time he was on it. I looked back on my blog, and on 11/10/12, I blogged that it only took 13-15 minutes for the TOBI, but this time around it has been taking like 25 minutes! That's a big difference for a little kid! Even Lil' Chris started complaining by saying, "I don't want to do TOBI, b/c it takes too long!" Poor kid. I think it might have been b/c Nurse P sent us the wrong neb cup. It was the same, but it came with a different mouth piece(one to attach to the mask, which we don't use), so we took the mouth piece from the last one and used that. We washed the old neb cup a couple times, but it still had that hard residue on it that wouldn't come off down in the bottom:( I guess we didn't wash it well the last time we used it...prob b/c we were thinking we would never have to use it again...wishful thinking I guess. Oh well, lesson learned.

He has a cf clinic apt on 2/20 where he will get his 3 month check-up and another throat culture to see if the Pseudomonas is still there. If so, then we will do TOBI every other month, but not Cipro. Praying for no Pseudo or anything worse!!!

On a good note...he has been doing really well with learning to read!! I've been working with him the last few days and he can now read 30 words!!! Tonight he read most of a book to me at bedtime! I was soooo proud of him!! I made flash cards with site words on them. We started out with 10 words the first day, and then we have been adding 10 more words each day! He's doing really well! His incentive...a freeze pop:) This kid is easy:) LOL We are praying he will get to move onto 1st grade next year and not have to go to all day Kindergarten. Right now he is in 1/2 day Kindergarten. 

We might be able to skip Preschool for Ayla, b/c she can identify all the letters, colors, shapes, and has been reading words too, b/c she has been watching me teach Lil' Chris!! We even play games as to who can find the word the fastest! I love it!! They are both so competitive and this helps keep Lil' Chris focused:) Ayla is very bright for her age...she knows the order of the rainbow(I didn't even learn that til I worked retail and had to learn to merchandise LOL:), and can tell you who's birthday is next..."Forst, it's my birfday, then Mommy's, then Chris', then Daddy's!" is what she says:) She just needs to learn to talk right. She says "f" for "th" and "o or y" for "L" and a couple other that I can't think of right now, b/c it's late;) If you ask her to spell her name it sounds like "Ayoa", but she says "yike" instead of "like". LOL I've been trying to work with her on that, but she gets frustrated and angry when I correct her. Oh, and she skips the number 13 when counting, and when I asked her why, she said that she can't say it, she just gets embarrassed...poor thing. It's a work in progress, she'll get there.

Thanks for all your prayers,
M
PS. Please keep Tricia(adult CFer) in your prayers as she was not able to get listed yet for a double lung transplant that she desperately needs.  Also please pray for Stacy A. from my work with Bronchiectasis, which is like CF. She hasn't been feeling her best and had to get a Picc today:( Get well soon, Stacy!!

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!

CF Update

Lil' Chris is doing very well on the TOBI and Cipro!! Praise the Lord!! He has no cough at all...not even a TOBI cough yet! Please continue to pray that these meds work to get rid of the Pseudomonas.

Alya's sore throat is all better! YEA!! Unfortunately my husband's nose has been running, so praying that the kids and I don't catch his cold and that it's just allergies or something.

Please pray for Tricia, adult CFer, who has had a rough time lately. Also pray for little Aubrey who has caught the bug going around.

I can't believe Ayla's 4th birthday is on Tuesday!!! Where has the time gone?!? I let her pick our her cake today. She chose Tangled. We have been watching that movie a lot lately;) She doesn't even have any Tangled toys and that's not what I got her for her birthday, but that's what she wanted for her cake:) LOL!!

 HAPPY EARLY BIRTHDAY, AYLA!!!

WE LOVE YOU!!! 

Thanks,
M 

CF Update / Bad Virus or something???

TOBI arrived Wed evening, but we didn't start it til Thurs morning. He has been doing great with the TOBI, but he HATES the cipro pill b/c it is chalky. I hate Cipro b/c he can't have any milk or cheese 2 hours before or after taking it...I'm sure he hates it b/c of that too;p The reason is, b/c it makes the Cipro not work as well apparently.

Thurs he came home from school with some kind of virus. I was very worried it was the flu, but thankfully it seems like it was just a 24 hour bug or something. He had a very bad headache in the middle of his forehead, a sore throat, and a bad tummy ache. He was just lying around with no energy. Then around 6pm he started throwing up off and on until 11pm. He was throwing up like he had Soy Protein which he is allergic to, but he usually doesn't have the other symptoms with it, so we aren't sure what he had. Today he seems fine. He took all 8 pills and ate his whole bowl of cereal and has been running around playing with Ayla!! Then he did his Albuterol, Vest, and TOBI. For some reason, the TOBI seems to be taking a lot longer this time than it did a couple months ago. Not sure why, it's the same dosage. Maybe the setting on the machine got bumped. I'll have to check it out.

I almost took him to our Pediatrician yesterday, but our CF clinic(by the time they finally got back to me) said not to take him b/c it's too dangerous for him b/c he could pick up something worse. I almost still took him, but he refused to go and I thought maybe that was a sign. So I didn't take him and I am sooooo glad I didn't b/c he is doing so much better!!! Who knows, if I would've taken him, he could've picked up the flu that's going around like crazy and then possibly end up in the hospital. Good thing Lil' Chris knows his body;-)

Unfortunately Ayla is complaining of a sore throat today, so I'll have to keep a close eye on her:(

I have soooo much to do to get ready for the walk and fundraising!! No better place to make a list than on my blog, right?? LOL...

1. I have to make a new fundraising video or at least update my old one;p I've used that one like 3 years in a row, so I really want to make a new one, but it's so time consuming, so we'll see. 
2. I also have to start working on the 30 second CF commercial for Clear Picture. So far I have pics from Denna with Aden doing his treatments. Thanks Denna!! She is really on the ball!! I still have to take a few pics of Lil' Chris;)
3. I have to get all the food nailed down for the walk...Dominos, McDonald's, Panera Bread, Frito Lays, Buehler's fruit, and ice from Speedway.
4. I have to contact the radio stations
5. I have to nail down some of the entertainment for the walk...Dr Dave who makes the best balloon animals and Pat Catan's for a craft table. 
6. And most importantly...I have to raise money for a CURE!!

Samantha, Denna, and Alma are doing a lot to get ready too...
Samantha is going to contact the police dept and fire dept to try to get a police car, ambulance, and fire truck for the kids at the walk. She's also going to contact the newspaper to get an article about the walk. Try to get water donated for walkers. And Samantha, Denna, and I are working on getting prizes for the walkers:)  Alma is going to make her WONDERFUL cookies again and maybe some of her famous cupcakes too;) She is also going to try to get water and soda donated. The 4 of us are also going to try to put together some signs, one for each of our kids to put up around the walking path with info about our kids and their pic on it:)

So, lots to do and only 3 months to do it!!! It's going to be soooo much fun!!! I can't wait!!

Sign up to walk today and if you can't walk, but would like to sponsor me, click this link as it is 100% tax deductible and will get us one step closer to a CURE for Cystic Fibrosis...

http://www.cff.org/Great_Strides/LilChrisChris6765

 
Thanks for your continued prayers that Lil' Chris kicks this Pseudomonas out!!!
M

2012 Great Strides Totals / TOBI Update

Totals are in for 2012 fundraising...our walk raised $16,800 for a CURE for Cystic Fibrosis!!! WOOHOO!!! We've come a long way since our first walk where we raised like under $5,000 I think:) Each year we raise more and more for a CURE for Cystic Fibrosis and I can't THANK YOU ALL enough!!! It means soooo much to all us CF families!!!

Our A Cure 4 Lil' Chris team raised $6,967!! WOOHOO!!! That's awesome!! My calculations were over $7,000, but one of the Kohl's grants took longer than I thought and actually is on my new 2013 Great Strides Walk page:) That's ok, I'm starting off with a bang!! Although had I realized, I would've put in the extra $33 to put us at $7,000 ;-) LOL Oh well! Here is my link for 2013, who's gonna be my first sponsor? Remember, it's 100% tax deductible...

http://www.cff.org/Great_Strides/LilChrisChris6765

Yesterday we had a GREAT 1st meeting to kick off the new fundraising year and start getting ready for the walk this May 5th, 2013 at 11am!!! I'm really excited about this year, b/c we have 2 new committee members who are really motivated to not only have a great walk, but most importantly raise as much money as possible for a CURE for our little ones and all CFers. Big THANK YOU  to Samantha and Denna for being so passionate about a CURE and wanting to help in any way!! 

Samantha has a 9 month old CFer named Aubrey. She is the cutest lil' thing:) She was diagnosed at 3 months old. Her older sister, Makayla, went to preschool with Lil' Chris:) I wish they could hang out more often since we live so close, but it makes it hard having cfers in both families as we have to be careful of cross-contamination:(

Denna has a 9 year old son named Aden with CF and another son without CF named Alex. Aden was just diagnosed a little over a year ago. Denna has a great outlook on becoming a committee member, "It'll be good for not only myself but also Aden and Alex. Just for them to learn that no matter how small the contribution, every person can make a difference." Together, the 5 of us...Denna, Samantha, Alma, Kathy, and myself...can and will make a BIG difference!! :) Denna has already jumped in and has started getting things going for the walk and it's only been one day!! And Samantha has already gotten prizes for the walk and has done a few fundraisers already!! I'm soooo proud of these 2 ladies and proud to have them on our committee:) It's gonna be a GREAT Year!!

BIG THANK YOU TO NANCY, my sister D's mother-in-law, for doing a Yankee Candle fundraiser for CF and raising $267.60!!! WOW!!! That's AWESOME!! The cool thing is...I didn't even ask Nancy to do this, SHE came to me with the idea!! I LOVE her passion for a CURE for CF!!! Nancy has always been a BIG supporter of Lil' Chris and has donated each year and is always thinking of new ways to raise money for a CURE!! I can't THANK YOU enough, Nancy!! We love you!!

As for a CF update on Lil' Chris...his TOBI should be arriving today on our doorstep. This will be his 2nd time on TOBI and Cipro. We have had the Cipro for a few days now, but we had to wait until the TOBI got here to start it, b/c they have to be taken together. If he cultures Pseudomonas again after this next 28 days of treatment, then he will be on just TOBI, not Cipro and TOBI, every other month:'( Please pray this doesn't happen. If it does, then we'll take it one day at a time. 

WE NEED A CURE NOW!!!!!!! They are soooo close with the new drug Kalydeco combo. Lil' Chris just needs to stay as healthy as possible until it gets done Phase 3 and clinical trials, and gets approved by the FDA. Please pray this is a CURE or a better control of the lung issues associated with CF!

Thanks everyone,
M  
PS. Happy Birthday to a faithful blog reader, Kevin W.!!! Hope you have a great day!!! ;)

TOBI is All Done / CF Fundraiser!!

WOOHOO!!! TOBI ended yesterday!!! When Lil' Chris did his Vest this morning, it was so weird not doing any breathing treatments with it!! That's the first time in 28 days, which seems like we've done it from day one! LOL

HE didn't even notice, but inside I was super excited!! I even got to set my alarm a little bit later, which was soooo nice with all the crazy hours I've been working lately!

Some parents have a little celebration when their kids finish TOBI, but I didn't do that with Lil' Chris. I just didn't want to bring any attention to it, since he did so well with it. I feel like if I celebrate it being done, then the next time he has to do it, he might not want to. IDK.

The one I really wanted to celebrate being done was the Cipro!! That was a pain him not being able to have any dairy products 2 hours before or after the pills! He didn't like that either, but he understood and cooperated. He really is such a good kid!!!!!!!! Except....he DID hide 5 of his Cipro pills under the toy box in the living room!

My husband found them when he went to put up the Christmas tree. My husband yelled at him and then when I got home from work, I yelled at him too. I know he only did it b/c he didn't like the chalkiness of the pill. He's used to the capsule type from his enzymes and Prevacid, or the gel tab type from his Aquadek vitamin pill. BUT, I couldn't let him go on thinking that doing stuff like that is okay. After I yelled at him, I gave him a hug and then explained to him how important it is that he does EXACTLY what the doctors tell him to do. It's only for his own good and to help him get better or not get any worse. He seemed to understand, and took the 5 pills fine over the next few days.

I tried to tell him to put it UNDER his tongue like I do with my chalky lactaid pills, but he kept saying "Then how do I swallow them?" I tried telling him that when he takes a drink, they will float to the top and go down easy and they never touch the tongue and he never has to "taste" them. He couldn't understand how they would float with the liquid, so he continued to make us put the pill on the back of his tongue...practically gagging on it...and then he would swallow it. He never tried it my way, but I don't care as long as he takes them and doesn't hide them again!!

I called the CF clinic and we go back on the 17th to get another culture done to see if the Pseudomonas is gone or not. It will just be a culture visit, but if he starts a cough before then, he will be seen by his dr. Please pray that the TOBI and Cipro worked so that he doesn't have to do them again in 28 days!! As of right now...NO COUGH!!! PRAISE GOD!!!!

Also, please pray for our dear friend Stacy A. She has Bronchiectasis, which is like the sister disease to CF...the same lung issues, but with no digestive issues. She was just admitted to the hospital and just got an IV and may have to get a PICC tomorrow. Please pray she gets well soon so she can get her PFT's back up where they belong so she won't be so short of breath, and so she can return to work. We miss her at Kohl's!! WE LOVE YOU STACY!!! STAY STRONG AND GET WELL SOON!!!

The CF fundraiser the other day went GREAT!! It was so much fun!! BIG THANK YOU to Carrie G for suggesting CF be the cause!! And BIG THANK YOU to each of the 6 different parties for doing a raffle for CF!! And BIG THANK YOU to Deborah for letting us do it at her Garden Market for free!! And BIG THANK YOU to everyone who came and supported CF(It was great getting to talk to Mary, Daniel's mom)!! And one more BIG THANK YOU to my fellow Kohl's associates (Kim S, Roberta, Jolleen, and Cheyenne) for volunteering to do the event to get the $500 for a CURE for CF!! WOOHOO!! I believe that makes $5,000 raised for CF this year alone from Kohl's!!! Gotta love Kohl's...especially this holiday season as they are giving away one FREE purchases EVERY DAY at EVERY STORE and ONLINE from now til Christmas Eve!!! I LOVE working for a company who helps the community out as much as Kohl's does, esp when they let me give away the free purchase...BEST FEELING EVER!!! BIGGEST THANK YOU TO KOHL'S!!!
Thanks,
M
PS. We got our Christmas pics taken tonight, so be on the look out for them over the next couple weeks!!! They all turned out soooooo cute!!! If you would like a Christmas card, let me know!! I know Lil' Chris likes getting pics of other CF kids too:)

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,

M  

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

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