Clinic Check Up

Sorry guys it's been a while since the last post. Things have been crazy around here as always. I just want to drop in a say that Cammie's routine visit to the CF clinic went pretty good. Her throat culture came back with normal oral flora (normal, no infections).So that is really good news. Her weight, height and BMI (Body Mass Index) were all above were they needed to be. Because of her culturing Pseudomonas last throat culture the doctor had put her back on the inhaled antibiotic TOBI. This, as you remember, is done in 28 day's on and 28 day's off routine. Since this throat culture came back normal, we need to the next one to be normal also... this will allow us to discontinue the TOBI! So hopefully that will be the case at the next visit. The doctors talked to us about a new inhaled drug called Cayston, which is used just like TOBI to treat infections. The only difference is that the Cayston is 3 times a day, 5 min treatments, compared to the 2 times a day, 30 minute treatments of TOBI. Carrie and I discussed it and we decided to stick with the TOBI since it seemed to be working pretty good. The only problem we have found with the TOBI is it makes Cammie cough a lot. It's a side effect of the drug but, she seems to cough a lot more then what they are describing. We decided to put her on Xopenex before all inhaled treatments. Xopenex is what they call a Bronchodilator, or basically it opens the lungs up allowing the rest of her medication to get deep down in her lungs. This has seemed to help her a lot with the coughing, thank goodness. Other then that the doctor's appointment went very smooth... in and out.

In case you didn't see it last night... Christina and Ali (both with CF) made it though to the semi-finals of America's Got Talent! If you haven't seen them please google them or look them up on Youtube.

Hope all is well with everyone, and please if you have any questions please feel free to ask me!

What's been going on?

Sorry it's been a while since my last post. Things have been really busy around here.

Cammie once again will be an ambassador to the "Single Greatest Night". This is a fundraising event from the Cystic Fibrosis Foundation that showcases the top singles in the Jacksonville area. Each "Honoree" pledges to raise a minimum of $1500.00! And with 40 or so of them, it comes out to be a big chunk of change! So this year Team Cammie is going for the highest fundraising team! Come on Team Cammie.

As far as Cammie. She's doing okay. She just started her 28 days of TOBI (inhaled antibiotic) this past week and hopefully this will get rid of her infection. Here's praying since the TOBI makes her cough all the time. We go back to the CF clinic on July 6th so I will have more to report then.

Did everyone see the two girls on America's Got Talent last night. They both had CF!!! And man were they amazing!! If you haven't seen it, look it up. Their names were Christina and Ali, on the Portland auditions. What a great way to bring CF to the forefront!

Also please keep Courtney Starr and her family in your prayers...she is currently in the hospital for a two week tune up. She seems to be feeling better, but a prayer always helps.

On a different note (well not CF related). A guy that I work with niece was recently diagnosed with Leukemia. Her name is Elizabeth Forte and she is three years old. She needs every one's help. While undergoing Chemo she will need numerous blood transfusions. So the family is asking everyone and anyone to donate blood at your local FL/GA Blood Alliance. It doesn't matter what your blood type is, as they will bank your blood and send her the blood type that she needs. Her account number is 0048. Please everyone come out and support her!!

Well enough of me talking...need to go and enjoy the beautiful weather we are having. As always, let me know if you have any questions!

Cammie's Crew "Maryland Edition" Team Picture

Totals for "Great Strides"

Here is the totals so far for Cammie's "Great Strides" teams. Dont forget, the fundraising never stops!

St Augustine: $1325
River Walk: $1807.00
Team Mayo: $1000.00
Maryland: $1507.25

Total: $5639.25

Wow, it's a team record!!! Thank You all for coming out and supporting the CFF. You truely don't know how much it means to Cammie! If you haven't donated and still want to, click on the link to the right of my page. Thanks again for helping to make CF stand for Cure Found.

Maryland "Great Strides" Walk

The Howard County Great Strides Walk raised a grand total of $172,000!!!!

What a successful day it was! There was music by DJ Keith, a silent auction, demos by Kangaroo Kids and Baltimore Tae Kwan Do, and even a Cure CF Racing- race car. Thank you to all of my family and friends that donated. And let's give a huge Thank You to the ones that walk with us!!
Come out next year and join us in making CF stand for Cure Found!!!!!

Cammie's Crew (Maryland Edition) raised a total of $1507.00!!! And donations are still coming in!!!

I will get back to you on what Cammie's Crew did as a whole.

Update on Cammie. She's very excited to get off her inhaled antibiotic. It cuts out around an hour of treatments a day. She's off this for the next 28 days, and then we are back on for 28 days. Other then that she is doing pretty good. Next CF Clinic is in July, but I will be updating the website regularly.

Hope all is well

Maryland "Great Strides Walk"

Hey everyone, just wanted to let you to check back in a few for a recap of the Maryland Chapter of Cammie's Crew. My sister Kelly lead the team this year and from what she tells me they had a great time. She is in the process of writing something for me to post....oh and pictures to. From what I hear the walk as a whole raised around $152,000 and had around 600 people!!! WOW. Check back soon for the details!

OH and one last thing.....Cammie is going to be off TOBI for the next 28 days starting Wednesday!!!! OH YEAH

Riverwalk Great Strides!

Last night was the last "Great Strides" walk for Cammie's Florida teams. It was hosted by the Crown Point Hotel on the Riverwalk in downtown Jacksonville. This walk is unlike the others, as this one is only about one and a half miles long. We started off the evening with registration and some great music by Ace Winn (check him out at acewinn.com). The event was MC'd by Amadeus from 99.9 Gator Country and of course Angela from the CFF. The walk route was a great one! We walked along the Jacksonville river front and over one of the downtown bridges, the Main Street bridge, or the blue bridge as Cammie calls it. Once over the bridge we turned around and headed back to the starting point at the hotel

When we return to the pool deck, the music of Ace Winn continued to play and the Crown Point provided food and drinks for all of the participants. While eating, I gave a brief speech on where the CFF is in the latest research and how they are being affected by the current economic times.

Following my speech, it was raffle time! And for some reason, we had the luck tonight! We won two different movie nights and a gift certificate for the New Balance store. Unfortunately we didn't win the Nintendo Wii they were raffling off. The evening concluded with some more music and relaxing by the river.

All in all this was a great event. Special thanks to the girls at the North Florida CFF and to Amadeus and Ace Winn! I will get back to you on the total money raised for our teams when all the money finishes rolling in!

DON'T FORGET YOU CAN STILL DONATE!!! JUST CLICK THE LINK ON THE LEFT!!!!

Family, Friends of Alex Colbert Walk for Cystic Fibrosis | Firstcoastnews.com | Local News

Family, Friends of Alex Colbert Walk for Cystic Fibrosis | Firstcoastnews.com | Local News

Cammie's First Disney Trip!

Well yesterday we returned from Cammie's first trip to Disney (oh and mine)! She had a BLAST. The first day, Wednesday, we arrived around 3 pm and headed straight over to the Magic Kingdom. Cammie's first ride: The tea cups! We had it spinning so fast that I think she almost threw up. Next we explored the rest of the park, where we found a bunch of rides for her: Dumbo, Magic Carpet, Carousel, Riverboat, and the list go on! The evening concluded with fireworks over Cinderella's Castle, which we watched from the boat ride back to the parking area.

Second day started with a morning trip to the pool. Which was really the only thing Cammie really wanted to do! It's funny how you go on a trip Disney and the only thing Cammie wants to do is go swimming! After the pool we headed back over to the Magic Kingdom to visit the rest of the park. We spent most of the time on Tom Sawyer Island (some by choice and some by mother nature). After we we're finally allowed back to the mainland, Cammie wanted to ride most of the rides from the day before...so we did those and of course a little more.

Third day we went to Hollywood Studios were we saw the special effects demo, and the Little Mermaid. But the thing Cammie loved the most was the Toy Story ride. I think we rode this a minimum of 10 times. What a great ride. After Hollywood Studios we went back to the hotel and did a little swimming at the pool.

Fourth and final day was Animal Kingdom! As you all know, Cammie loves animals. So of course this was a blast. We did the Safari ride and saw all types of animals. We also did a bunch of small rides around the park and the last thing we did was "It tough being a bug" (A bug's life 4D show). All in all Cammie had a great time!

As far as Cammie's health, she's still doing pretty good. Still trying to kick the Pseudomonas from her lungs via inhaled antibiotics. Everything else is doing great. Hope you all enjoy the pics!!

St Augustine GREAT STRIDES!!!!

Hey Everyone! Carrie,Cammie and I just completed our St Augustine Great Strides Walk (One of two that we are doing). It was a blast!!! The walk was held at the World Golf Village for the first time and man this was a great spot for the walk. The walk started with a free breakfast sponsered by Publix. Pretty good little set up, apples and oranges, water, scones, and of course donuts!

The walk was a nice stroll though the communities of the World Golf Village and around the lake by the Hall of Fame, were it concluded. After the walk, a lunch was provided by Murry Bros Caddy Shack, Smootie King, and Dominos! So to say the least we ate well!

Following lunch, a small award presentation was held and an appox. total money raised was announced......the walk raised well over $25,000 and the money is still rolling in!!!! Way to go guys!!! I cant thank everyone enough for all the love and support that you give. It goes along way.

Well that it for now. A few pics from the walk will be posted in the next few days so check back!!!

P.S. DON'T FORGET WE WILL BE ATTENDING THE RIVERWALK GREAT STRIDES ALSO!!! THIS IT HELD IN DOWNTOWN JAX ON MAY 13TH. LET ME KNOW IF YOU WANT TO JOIN THE TEAM FOR THIS EVENT.

Clinic Visit 04/10

Hey Everyone!

Well we had Cammie’s normal quarterly check up last week at the CF Clinic. Let me first start off by saying, Cammie loves this place….no not really. A week prior to her appointment she we went to the lab to get her yearly blood work completed. You would think that would be a huge problem, but nope. Of course Cammie cried but that was about it, no screaming or kicking. Thank god. Man those people at the lab have a rough job, always drawing blood from kids every day. This check up was a important one. If Cammie’s throat culture came back with normal oral flora (Third time in a row), she would be taken off her inhaled antibiotics and placed back on the CF White Team (Just meaning she wasn’t growing anything in her throat culture). But that was not the case, go figure right. Her throat culture came back with Pseudomonas again (same as her other throat culture). What does all this mean? Well, Cammie will continue her inhaled antibiotics for the next 28 days, then she has a 28 day break. They do this so the bacteria doesn’t become resistant to the antibiotic. They also put her on a pill antibiotic, Cipro, for two weeks. This is a pretty strong antibiotic that takes its toll on her. But she keeps fighting through it.

Well on to the good news. Other then the throat culture, Cammie is doing great. Her weight, height, and BMI are above were then need to be!!! Her dosage for her digestive enzymes was increased, this means she will absorb more of the fat from what she eats. Before this she could only absorb around 14-15 grams of fat each meal, but now she’s up to around 20-21 grams. Her yearly labs came back well within the normal range. All of her vitamins were also normal. Other than that they were very pleased with her. We go back to the clinic in July. So hopefully we can get this throat culture back to normal.

So with the added antibiotics, Cammie does around 1 ½ hrs of treatments and takes around 15-20 pills a day. Not too bad for a 2 ½ year old is it.

Just a reminder for everyone, Kelly is heading up the CF walk in Maryland this year. If you are interested please contact her. It’s going to be a great time!!

I hope everyone is doing good and please, as usual contact me if you have any questions!

Chris

Zoo Day

Hey Everyone...
We just go back from the ZOO and Cammie had a blast. The monkey's seem to be her favorite.

April is going to be the big push month for the Cystic Fibrosis Foundation's Great Strides. This is their annual walk that helps raise vital money for a cure. If you are interested in donating please visit our website at http://www.cff.org/Great_Strides/ChrisNaff6393

EVERY DOLLAR HELPS!!!!!!

CFF Shoot for a Cure & Prosperity Bank Meet and Greet

Well the past few days have been a busy one.
On Tuesday I helped out our local Cystic Fibrosis Foundation chapter at their annual Shoot for a Cure. This is a fundraising event that helped raise an estimated $40,000!!! The Shoot for a Cure is a sporting clay event were appox. 25 teams competed. This was a great event! You can find some pictures here: http://photos.jacksonville.com/mycapture/category.asp?eventID=967516&CategoryID=10519

Today Cammie and I met the folks from Prosperity Bank in St. Augustine to help them kick off their Great Strides fundraising effort. Cammie and I both helped raise awareness for CF and explained what we do on a daily basis to help combat this disease. This will be the second year that Prosperity Bank has formed a team for the St Augustine Great Strides! Woo Hoo! They really are a great bunch of people and we are really looking forward to working more with them.

Tomorrow should be a pretty calm day since I need to work. So I will keep everyone posted!

A Brief Introduction

Since this is my first blog, I'd figure why not introduce myself. My name is Chris and my daughter Cammie who is 2 1/2 has Cystic Fibrosis (CF). Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the US. A defective gene and its proten product cause the body to produce unusually thick, sticky mucus that: Clog the lungs and leads to life-threatening lungs infections; obstucts the pancreas and stops natural enzymes from helping the body break down and absorb food. And believe me this is just the disease in brief.

Cammie was diagnosed at 5 months and for the most part has been pretty healthy. She has a daily routine which includes a number of preventative treatments. This treatments include nebulziers daily and a machine called the "Vest". The "Vest" is a airway clearence devise that pretty much vibrates her lungs to get the sticky mucus broken up and out. On top of that she swallows on average 20 pills every day just to digest her food. Everytime she eats she takes pills.

Even though Cammie has CF she maintains a normal 2 year old's life. She enjoys the zoo, playing outside, and of course keeping mommy and daddy busy.

I'm going to use this blog to keep everyone up to date on Cammie and things going on in the CF community. So please stay tuned for more posts.