Bactrim Update / CVS

The Bactrim he started on Sun has def helped and his cough is pretty much all gone. YEA!!!

Only problem is...it was supposed to be for 14 days, but it ran out in only 6 days. So I called our CVS pharmacy and she said that the dr may have made a mistake in the math, so she called the dr and they said that he should be on it for 14 days. So now I have to go pick up another bottle. I'm so glad that our local CVS pharmacy was able to figure this out quickly on the weekend so that there was no lapse in giving him his Bactrim. Once I told the pharmacist that he has CF, she took the situation very seriously and figured it was a mistake in math on the script. I LOVE OUR CVS!!!

CVS is sooooo very easy to order refills too!! I just do it through an app on my phone:) It literally takes me less than a minute!! LOVE IT!! The app also lets me see when the last time I got a refill, what date I can refill it again, and when it expires!! This is GREAT, b/c then I can let the dr know if I see it's going to expire soon:) It's not good to have lapse in meds with CF. I try my hardest to stay on top of ordering all his meds and this CVS app makes it VERY simple! I wish we could get all his meds through CVS!! If you don't use CVS, I highly recommend it if you can!!

I'd say another fav part of CVS is that they have a drive-thru. I always hated going into Drug Mart to get his meds, b/c you never know what germs you might pick up. I still sanitize after touching the pen and clipboard thru drive-thru at CVS...you can never be too safe;)

Save the date for our next Great Strides Walk for CF on Sunday May 4th 2014 at 11am in Wooster!!!

Thanks for all the continued prayers! Keep praying for a normal throat culture, weight gain, and high PFT's this Wed at his 3 month CF check-up at the clinic!!!
M
PS. HAPPY BIRTHDAY TO SAMANTHA, AUBREY'S MOM!!!! :)

Cough Update

Lil' Chris started 14 days of 3tsp 2x a day of Bactrim on Sunday 12/29/13 for his wet cough. This is the first antibiotic since last January when he was on Tobi and Cipro for Pseudomonas!!!! Praise the Lord he has had an AMAZING year despite having cultured Pseudomonas last Nov and Jan!!!! This is only his 4th cough in 2013. Not bad!! The other coughs weren't bad and went away without antibiotics, but this one kept getting worse, so I felt he needed a little help of an antibiotic. Luckily the medicine is working great and his cough has gotten much better!!

We are going to use his next cf clinic apt as a follow apt for this cough and antibiotic. It's on Jan 8th, so please pray for normal throat culture, good weight gain, and good PFT's!!!!

I hope everyone has a HAPPY, HEALTHY NEW YEAR!!!!! I'm praying 2014 is the year for a CURE for CF!!!! They are sooooo close!!! I'll be starting my fundraising soon to get to that CURE sooner!!! :)

Thanks,
M
PS. I LOVE my new laptop, honey!!! Thanks so much!!! :)

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

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