1st Visit from the Tooth Fairy!!!

Guess who lost his first tooth at 6 years old???

He was sooo excited that the tooth fairy was coming, that he couldn't fall asleep!! :) LOL  Is it weird that Mommy couldn't sleep either just anticipating the look on his face when he found out the tooth fairy had come?!? LOL

Luckily his most recent favorite movie is The Tooth Fairy with The Rock:) He's been watching it over and over and over...I guess anticipating when HE was going to get a visit from the tooth fairy;) Lucky for us, on the movie the kid only got $1 from the tooth fairy, so when I asked Lil' Chris what he thought he was going to get, he said $1. I wasn't sure how much it should be these days, so I was glad for the movie;) LOL

Now the tooth next to that one is loose and also one of his top front teeth is loose too!! Looks like he may be asking Santa for his 2 front teeth this year;p LOL
M

1st Grade Field Trip to Ramseyer Farms

 Cool tunnels to run thru and peak through the bubble:)

 Cool new slides:)

 Lil' Chris doing flips, and Ayla getting buried in the corn:)

 Lil' Chris' turn to get buried:)

 Lil' Chris' Wooster Christian School 1st Grade class

As you can see in the pics, the kids had a BLAST at his 1st grade field trip to Ramseyer Farms!! He has a great bunch of classmates this year:) I look forward to getting to know them and their parents better:)

Culture Result!! / Pulmozyme WORKS for Lil' Chris!!

We finally got his throat culture result back and it was NORMAL AGAIN!! THAT'S 3 TIMES IN A ROW!!! WOO HOO!!! This momma is sooooooo excited!!!

I'm hoping and praying he goes the whole school year with all normal culture results! He goes for check-ups at the CF Clinic every 3 months, so his next appointment is on 1/8/14. Last year it was the end of October that he had his worst culture result...Pseudomonas:( But I guess we successfully eradicated it, b/c now he has had 3 NORMAL cultures!! YEA!!

So for now, no new changes to his daily routine. He still....
-takes 8 pills every morning, 
-5 pills with every meal and snack, 
-we try to feed him as many calories as we can(I wish I could eat whatever I wanted! lol), 
-he does his Vest for 30 min in the morning before school and 30 min at night before bed, 
-and he does his nebulized medicine called Pulmozyme every night.

I just wanted to say that we really do appreciate all that you have donated over the past 6 years, b/c it really helps bring out new and better meds for all CFers!! I gotta tell you...Lil' Chris has been on Pulmozyme for over a year now(he started last July) and he has only had one bad cough!! THAT'S AMAZING!!! He used to get 4-5 bad coughs a year! He used to be on antibiotics all the time it seemed! In the last year, the only antibiotics he was on was Omnicef until they discovered he had Pseudomonas, then they switched him to TOBI and Cipro. He did this one month on and then one month off and he hasn't been on any antibiotics since...and NO BAD COUGHS SINCE!!! WOOHOO!!! THANK YOU PULMOZYME!!! What Pulmozyme does is, it thins the mucus so it can be cleared out of the lungs much easier. CFers get thick, sticky mucus that builds up in their lungs and can cause really bad bacterias, like Pseudomonas, to grow. It is usually very hard to get rid of too, so we got very lucky. 

During his reading homework, he said he could even read it with his eyes closed;p LOL!!! It was sooo funny, b/c he kept peeking;p LOL!!!

Thank you everyone who prays for Lil' Chris on a daily basis!! Keep the prayers coming that he never gets Pseudomonas or anything worse every again!!

Thanks,
M

New Vest and Travel Neb!!!!!

 Guess who got too big for his blue Vest?? He now is in a Child Large!! I can't believe it!!!!

He is shooting with his Army Gun. LOL

 This looks like a school pic :) LOL

  He said he wanted the "Army Vest" b/c Spencer goes to the Army:) I think he learned to pose from Spencer too;p LOL

 New travel nebulizer. We are renting it to see if we like it...we'll probably end up buying it. It's pretty cool and he likes that he can walk around during treatment time:) 1st time ever not being tied down during treatment time!! (he started the neb before putting the Vest on to test out his freedom;)

Here are some pics of him using the travel neb, disposable neb cups, and his Army Vest on vacation to DisneyWorld...:)

 Ayla wanted a pic too;)

 He liked putting his arm thru the tubing;p

I def recommend using disposable neb cups when on vacation!! They were soooo nice!! They came individually packed, we used them, and then just threw them away!! Soooo easy!! We didn't have to worry about how we were going to sterilize them and dry them. We will def be using those on every vacation going forward!!!


http://mustardrevolution.blogspot.com/2013/09/2-years-ago.html  Remember baby Chaia from 2 years ago when I posted about her and her rare genetic heart disease?? Well, guess what?? She is still fighting like a champ!! Check her blog to see her cute lil' face:)

More Disney pics coming soon:)
M

Annual CF Clinic Visit Result 9/18/13 6 yrs old

Lil' Chris had a GREAT annual CF clinic visit the other day!! He gained some weight and a whole inch!! He was so proud that he didn't have any tears or even get teary eyed for either his throat culture OR his Flu Shot!!! He couldn't wait to tell his little sister, esp since she was rubbing it in that she only got teary eyed for her last shot;p LOL!!!

His PFT's were good too. Since he is 6 now, he started a new kind of PFT that he will only do on his annual visits that includes doing an inhaled Albuterol treatment, then different types of PFT's. He did VERY well!! He picked up on what to do after being told only once! He would go thru the motions before she would even tell him what to do! I was impressed!!!

New PFT with the door closed and she would use a microphone to tell him what to do.

His doctor said his lungs sounded GREAT!! YEA!!! This was the first year that we did not need to do Chest X-rays. He will do them every other year now. He does need to get blood work done before the end of the year though and each year:( He did not like hearing that...luckily for him I had to go to work;p We were there for 4 HOURS as it was:(

Just for my records,...
On 5/8/13 his height, weight, BMI, and PFT's were...48", 47.8 lbs, 33%, 84/79.
On 9/18/13 his height, weight, BMI, and PFT's were...49", 51.8 lbs, 44%, 94/82!!! He is in the 90th percentile for height and the 75th percentile for weight!! WOOHOO for BIG improvements!!!

Please pray with us that his culture comes back "normal" again! The last 2 have been normal, so praying for that again...and every time:) I'll keep you posted.

He has been doing GREAT health wise!!! He had a cold 3 weeks ago, but it did not turn into a nasty cough like it used to, so we are going on 8 months with NO ANTIBIOTICS!!!YEA!!!!!

His next check up is on 1/8/14
M

1st Grade and JK!!

I can't believe Lil' Chris and Ayla are both going to school now!! Lil' Chris is in 1st Grade and Ayla is in Junior Kindergarten. Time sure does fly!!!

They started on Tues 8/20/13 and they are both LOVING Wooster Christian School!! Ayla has the same teachers that Lil' Chris had last year, which is wonderful b/c they already know to be germ cautious even with Ayla, b/c she could bring home germs to Lil' Chris. Lil' Chris loves his new teacher and classmates! He's already asking for a play date with one of them:) He said "Micah's my best friend!" :)

 Here is Ayla's outfit that she picked out all by herself...Kohl's of course;)

Lil' Chris goes 9-3:30 and Ayla goes 9-12. Lil' Chris gets to take the bus in the afternoon which he LOVES!!! This was the first time he ever rode a bus all by himself...my lil' boy is getting soooo big;(

 
His new teacher has been very receptive to everything I have told her a bout being germ cautious. She even put a hand sanitizer in her recess bag, and he has a small one in his desk! She said she will move his desk if someone close to him is coughing or is sick just like they did last year. It seemed to work pretty good last year! He only had 2 colds during the school year, and after the first one it unfortunately turned into a bad cough which turned into our worst nightmare...Pseudomonas:( But, he did the harsh treatments of Cipro and TOBI and we were successful in eradicating it after a few months!!! He has cultured "Normal" since then!! His next CF clinic apt is on 9/18, so I am curious to see what his culture result will be. I'm praying it continues to be Normal and no Pseudomonas!! Pseudomonas is a VERY VERY dangerous bacteria to have in his lungs.

The Administrator has been super helpful in setting up his 504 plan again this year. We only had to add one thing to it b/c he will be eating lunch there this year. Since calories and keeping his weight up is soooo important for CFers, I asked that he be monitored and pushed a little to make sure he eats. So far so good! The first day he came home and said "Mom, I ate my WHOLE sandwich...even the crust!!" :) YEA!!! I'm trying to figure out how to get more calories into his lunchbox...this is all new, so still figuring things out;) I'm thinking maybe buying something that won't spill so I can put his whole milk or scandishake(600 cal drink) in it. I'll figure something out.

I'm also getting with the Administrator to send a letter out to the parents of both their classes to inform them what CF is, that it's not contagious, and to ask if they could please keep their child home if possible when they are sick, or to let the teacher know in the morning so that she can keep them separated. This is HUGE HUGE HUGE and very important for Lil' Chris' health, b/c just the common cold could put him in the hospital!!

The kids are selling Eagle Cards as a fundraiser for school, so if anyone lives in the Wooster area and would like to buy one, just let me know! They are only $10 and have many different great deals on them!! One of them being a buy one public skate admission and get one free at Alice Noble Ice Arena. That's where I do most of my CF fundraisers!!! I'm proud to say that a few of the others on the card have helped out with CF in one way or another too!! Here are some of them...
Domino's Pizza(they donated all our pizza for our walk the past 2 years:)-buy one pizza and get one free
Auntie Anne's-buy 2 pretzels and get one free
Buffalo Wild Wings-buy a sandwich and get one free
The Faithful Little Cupcake(they did a CF fundraiser last year:)-buy a coffee and get a free cupcake
Hartzler's Ice Cream-buy one small ice cream and get one free
OH-YO Frozen Yogurt-buy one and get one free up to 10oz
Omahoma Bob's BBQ(they did a give away at our CF walk:)-buy one dinner and get one free
Wayne Lanes-buy one game and get one free
Wendy's-buy one combo meal and get one free (you get your money back right here, b/c one combo meal is like $7 and you can do it up to 4 times, so you spend $10 on the card and can get potentially $28 worth of food for free!!:)
There are others too, and some you can do up to 4 times and others are 2 times each, and others are unlimited amount of times, like Domino's!!! :) The best part is, that you have a whole year before it expires!! Let me know if you are interested, b/c we only have until 9/19 to sell them!! Last year we personally used 2 cards!! The Wendy's alone was worth it!! :) 

BIG THANK YOU to 5 of our neighbors who bought them already!! It really is a great deal! The kids were soooo excited to go around and sell them! I was surprised that they were not shy about it at all!! LOL We did half the neighborhood the other day, and we will do the other half tonight or another night:)

As for a CF update...Lil' Chris is doing GREAT!!! He got something new that is kinda cool...but I'll save that for my next post;P

Please pray they both have a great, happy, HEALTHY school year!!!!
Thanks,
M
PS. It's kinda nice having time to blog again:) lol

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!!

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:(