Breezy's Bravery A Fight Against Cystic Fibrosis

2011 Palm Coast Great Strides Walk

2011-08-25T21:08:00.001-04:00

Welcome to Palm Coast Great Strides 2011 this will be our second annual walk and last year was a great success. With your help we can make this year’s event even more exciting and successful.We walk in a effort to raise awareness and funds for the CFF in support of the nearly 30,000 Cystic Fibrosis patients in the United States and 1 Palm Coast child especially our little Breezy.

Mark your calendars now for an afternoon of FUN
On: Saturday, September 24 – 5:00 p.m.
At: Town Center in Central Park.
Before we lace up our walking shoes, I would like to thank you for your commitment to finding the cure for cystic fibrosis.

Great Strides: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation’s largest national fundraising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2010, nearly $35.5 million was raised to support vital CF programs.

Palm Coast Observer Article- By Brian McMillan

2010-10-14T13:38:00.002-04:00

Six-year-old Breezy Shiflett wants to be a veterinarian some day. For now, at her home in the E-Section, she keeps an eye on the wildlife in the backyard.

“Squirrel!” she says, pointing to a bushy tail scurrying across the lanai. “Mostly, I’m at school when he comes. I’m lucky today.”

You would never know by looking at her, or by listening to her describe how she likes losing teeth because the tooth fairy once gave her 10 bucks, but Breezy is lucky every day to be alive. She has cystic fibrosis, a genetic, chronic illness that creates a mucous buildup in the lungs. As a result, the lungs can become clogged and the pancreas can be hampered in its ability to digest food. There is no known cure. Life expectancy is 37 years.

Her mother, Jessica Bear, persistently took her to doctors until they had correctly diagnosed her at 4 years old and put her on medication and other treatments.

Bear also led the effort to start a local, annual Great Strides Walk for Cystic Fibrosis, which took place Friday, Sept. 24, at Town Center. Bear said about 200 people showed up, which was a tremendous turnout even country.

“That’s my talent — watching animals,” says Breezy, wearing purple flip-flops and purple pants. “Guess what? I have a pet swimming frog. … The main thing we see sometimes is golf balls on the other side of the lake. I picked two of them up and put them in my jewelry box. Because there was room for them.”

Breezy takes three pills with every meal, and her medicine routine changes frequently, as she battles different infections. She also takes nebulizers and inhalers. Every day or two, for about 20 minutes, she wears a special vest that fills with air and then vibrates her chest to loosen the mucous. She takes another pill to help her cough it up. Physical activity helps, and so Breezy is also on the cheer squad for the Imagine School Lions.

“But I’m a Georgia Bulldogs fan,” she says. She inherited the passion for the University of Georgia from her father, Nate Shiflett. “And I do not the like the Florida Gators,” she says. “My main thing that I really like is dogs. And I do not like alligators, because they kill dogs.”

“Breezy” is a nickname; her real name is Brianna, but when she was younger, long before she was diagnosed, her parents called her “Wheezy Breezy,” because she always seemed to have a raspy voice. She also didn’t gain weight, weighing just 23 pounds at 4 years old. Thanks to the treatments, Breezy is now approaching the 50th percentile, which has been one of Bear’s goals. Bear continues to do whatever is necessary for treatments (the vest cost $16,000), and she keeps close to friends in online, cystic fibrosis groups. She finds strength in the support she has received from people like Marie Butler, of Imagine School, who helped round up about 100 people for the Great Strides Walk. And Bear convinces herself that 37 is just a number — an average.

“Many people with (cystic fibrosis) reach their mid-20s and have living lung transplants or donor transplants,” she says. “You lose people who are a lot younger than that, but then there are some of them out there who are 60 years old.” And at the same time that she cares for Breezy, Bear also leans on her.

“Having spirit means you have a positive attitude, and doing your best,” Breezy says. “That’s our rules in class. To have, like, a smile on your face.”

Hundreds Rally for Cystic Fibrosis Walk- News Journal Article

2010-10-14T13:32:00.002-04:00

BY AARON LONDON, STAFF WRITER

A steady, breezy rain did not deter the more than 200 walkers who turned out Friday for a Cystic Fibrosis Foundation Great Strides walk.In fact, breezy was why they were there. Breezy Shiflett, to be exact.

Organized locally by Nate Shiflett and his wife, Jessica, the funds raised by the walk go to support research on the disease that has touched their lives through their 6-year-old daughter, Breezy.

Nate Shiflett said the response to the walk -- the first one of its kind in Flagler County -- was overwhelming.

"We started to get a buzz about a month ago with trying to promote the event," he said before the late afternoon event. "Imagine School helped a lot."

The Imagine School at Town Center presence was strong, with more than 100 students, teachers and parents on hand to walk for Breezy and others with cystic fibrosis.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, according to the Cystic Fibrosis Foundation.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have extended life for children and adults with CF into their 30s, 40s and beyond, the foundation states.

Palm Coast resident Katie Frazier was there with her Gamma Eta sorority sisters from Jacksonville University to walk.

"We're here for our friend, Lacey, and her brother that passed away, Logan," she said.

For Claudia Werner, executive director of the North Florida Office of the Cystic Fibrosis Foundation, the turnout and enthusiasm of participants was heartwarming, especially given the fact it was a first-year event in Flagler County.

"You're usually lucky if you get 100," she said. "As of last night, we had 215 (walkers) confirmed."

Werner said Great Strides events are held all over the country and are the biggest national event the foundation holds. The Flagler County effort was expected to raise between $10,000 and $12,000.

"This is what funds the science for the Cystic Fibrosis Foundation," she said.

For Nate Shiflett, the event was all part of life with a child with cystic fibrosis.

He said Breezy was not diagnosed until about two years ago, though he and his wife knew something was wrong.

"We knew that something wasn't quite right," he said.

Finally, a doctor in Ormond Beach diagnosed Breezy with CF.

"It was sort of a relief, on the one hand, that we found out what it was," Shiflett said.

Shiflett said he and his wife plan on making the walkathon an annual event.

"Hopefully we can continue to do this year after year and continue to build it up," he said.

http://www.news-journalonline.com/news/local/flagler/2010/09/25/hundreds-rally-for-cystic-fibrosis-walk.html

Great Strides Walk 2010

2010-10-14T11:33:00.001-04:00

The Great Strides Walk 2010 we had such a great turn out at this years walk with about 200 participants. We have raised around $8,000 so far and will continue to raise money until December 31st. Thanks so much to everyone who helped! Imagine School Town Center had over 100 students, parents and staff. We had wonderful community participation from Houligan's, Bruster's Ice Cream, All Counties Insurance, Smart Technologies, Dominic's Deli, Prosperity Bank, The Fire Department, and Mezzaluna Pizzera.

Join us at Houligan's Tonight!!

2010-09-22T13:28:00.007-04:00

Join us at Houligan's Tonight Wednesday 22nd Between 4-9 and 10% of your purchase will be donated to Team Breezy's Bravery. Help support Breezy's Bravery to reach our fundraising goal for Great Strides 2010!!

Please click on and print this coupon and give it to your server!!

CT Scan

2010-09-15T09:03:00.001-04:00

Breezy had her CT scan yesterday, and she did great. The told her to be completly still and she said "Like the thinking statue?" Which I though was funny because she is talkin about the thinking statue in Night at The Museum and that statue comes to life and moves around. But she did stayed still and we should her back from the doctor soon.

I had permission to take the photos : )

CF Clinic and ENT Appointment

2010-09-08T10:36:00.001-04:00

Breezy's Clinic appointment went well yesterday. The doctors said to keep doing what we are doing because her weight and lungs look great!! We are waiting on the blood labs and throat culture results which should be back next week. Breezy also saw the ENT yesterday and he wants to do surgery to remove her nasal polyps. She has been having trouble breathing out of her nose for some time now. She has a terrible time getting good sleep and mouth breaths through the night. So next Tuesday we are going to get a CT scan so that a surgery plan can be made. I'm a bit nervous about having her go under and have surgery but I know this is the best thing and I really want her to be able to breathe easier.

Wordless Wednesday...

2010-09-08T10:10:00.001-04:00

September 6th- Two Years Diagnosis Anniversary

2010-09-06T10:21:00.001-04:00

September 6th 2010 is Breezy's Two Years Diagnosis Anniversary!! It is so crazy that we are already at the two year mark. Breezy has had CF since she way born but two years ago the figured out what all of her symptoms were. Cystic Fibrosis was not at all what we wanted to hear but to have a diagnosis was such a relief to us. The past two years have presented us will many challenges and rewards. Breezy is such a wonderful strong child I have truly been blessed.

Wordless Wednesday...

2010-09-01T22:22:00.000-04:00

Breezy CF Update

2010-09-01T21:45:00.001-04:00

Just an update on Breezy...I have been working on the Great Strides so much that I haven't been giving as many Breezy updates. She was in the hospital for four days in July with double lung pneumonia. While she was there she completed a round of I.V. Tobi. After she was released we continued the inhaled Tobi at home. Which we are still doing now, Tobi is by far her least favorite medication but it works so she endures.

The other problem that she is currently dealing with is the uselessness of her left nostril. She can not breath out of it at all. So I'm excited to say that she is going to see the ENT specialist at Nemours next Tuesday. We will have a day packed full of doctors, Tuesday Breezy will see the pulmonologist , nutritionist, respiratory therapist, and woo hoo the ENT. I can't wait to fix her little nose, the crazy thing is that Breezy never complains I have more complaints about her nose than she does. I'm so lucky to have such a strong little girl!!

Current Medications:

Zenpep- With Every Meal

ADEK- Once Daily

Nasonex- Twice Daily

Albuterol- Twice Daily

Tobi- Twice daily

Zithromax- Monday, Wednesday, Friday

Prevacid- Once Daily

Pulmozyme- Once Daily

Hypertonic Saline- Twice Daily

Miralax- Once Daily

Current Treatments:

The Vest

Nasal Flush

What a wonderful community...

2010-09-01T07:30:00.001-04:00

I am so thankful to say that our community has shown an outpouring of support. This is our first Great Strides in Palm Coast and It is going to be great. I can only imagine the wonderful things that we will accomplish in the years to come. In the last week we "Breezy's Bravery" have been given so many wonderful opportunities. Claudia from the CFF and myself completed an interview on the local radio. We also made an adorable radio commercial that will run until the walk.

Radio Commercial:

http://www.onetruemedia.com/otm_site/auth_share?work_id=12346989

This was my first time on the radio I was so nervous.
Radio Interview: Minute Marker 19:37

http://files.wnzf.com/open_line_082410.mp3

Team Breezy's Bravery has had lots of meetings with awesome business owners, community clubs, and new and good old friends. We are hoping to make this more of a festival and really get the community involved. If you know anyone in town who would like to get involved or donate let me know, we would love to have you join us.

Flagler Palm Coast Great Strides 2010

2010-08-24T09:06:00.001-04:00

Thanks to everyone that has offered to help with the walk this year! It is going to be great, I'm so excited about all of the support. I just wanted to take a moment to thank the the companies that have joined us in the fight against cystic fibrosis. If you would like to help with the walk please feel free to contact me at BreezysBravery@gmail

We are so excited to be partnering with Imagine School Town Center, Brusters Ice Cream, Houligan's, The Flagler Rotary Club, Prosperity Bank, ACI and Dominic's Deli !!

Radio Interview !!

2010-08-24T08:50:00.002-04:00

Claudia from the Cystic Fibrosis Foundation and I will be on the radio around 9:40 today August 24th talking about Cystic Fibrosis and Breezy's Great Strides tune in to listen. 1550 am or 106.3 fm Flagler County : ) http://www.wnzf.com/

That was fast...

2010-08-21T22:14:00.002-04:00

I can't believe that the summer is almost over, Breezy will be starting first grade on Monday. It feels like she just got out of school. Every year goes by faster than the last these days and I am not so sure that I like it that way.

I guess that I should give a little summer up date on how we have been doing. Breezy finished school in June and just a couple of weeks later had her sixth birthday. We had a tacky tiki luau in honor of Hawaii which is very close to my heart because I lived there as a military child when I was growing up. So Breezy had tons of family and friends over to celebrate and had a wonderful time. We had it all cake, games, wonderful Hawaiian food and of course swimming.

Then one week after her birthday came the not so fun pneumonia hospitalization, Breezy spent 4 days in the children's hospital. This just broke my heart because she had been doing so well, missed very few days of school and had to spend her free summer time in the hospital. But as much as it was a bummer Breezy is always a trooper and we made the best of it. I also can't complain because she is feeling great now and that is all that matters, when you strip all of the daily struggles and speed bumps away at the end of the day I have her and that is something priceless.

Breezy has been having fun with her friends taking shopping trips, having play dates, swimming and crafting which is one of her favorite things to do. We took a trip to Tampa where my young aspiring veterinarian was treated to a zoo visit by her Grandpa. She loves the zoo and Grandpa loves to make Breezy happy. We have made countless trips to the library because Breezy is a sponge and love to read. She has a fondness for Junie b. Jones which started with her wonderful kindergarten teacher. But she has added the Magic School Bus Chapter books to her list of favorites. Breezy's has got to spend time with both of her Grandma's this summer with she has loved. Grandma Wanda came to visit when Breezy was in the hospital and that meant the world to us. Grandma Diana just returned back from Guam and Breezy has enjoyed having her around to play with and just spend time with. Breezy and Grandma Diana and partners in crime and keep me on my toes : )

I know that I have missed a million thing that we did this summer but I think that I covered that major stuff.

Great Strides Video 2010

2010-08-21T09:09:00.000-04:00

Breezy's Bravery Great Strides 2010

2010-07-19T09:16:00.000-04:00

Visit out Great Strides Page to help!!

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6689&idUser=370884

GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. This year, I'm walking in the GREAT STRIDES walk at the 2010 Flagler County - Palm Coast Town Center walk on 09/24/2010. Please help me meet my fundraising goal of $1,500.00 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.

Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.

Breezy is a Graduation Girl !

2010-06-09T19:19:00.003-04:00

I am so proud of Breezy for her great work this year in kindergarten. She is now officially a first grader, man is she growing up way to fast. Her graduation was adorable, all of the kids dressed up as what they want to be when they grow up. Breezy of course dresses as a veterinarian.

Breezy & Ms.Smith

Breezy and Friends

The Last Week of School!

2010-06-09T19:14:00.000-04:00

We have been super busy with all of the end of year activities at school. last week was tons of fun for all of the kiddos. It was sad to see the year end because it has been such a wonderful year, Breezy loved her teacher and it was hard to say goodbye to Kindergarten.

Last Wednesday was the final Reading Buddies Day, which is when the little kids pair up with a 4th grader.

Last Thursday the kids brought their pillows, blankets and a good book to have a reading day.

Then on Friday it was bring a board game day.

Monday was Field Day!!

Wordless Wednesday !

2010-06-02T21:15:00.002-04:00

Culture Results

2010-06-02T21:12:00.001-04:00

Breezy's Culture came back in and it was positive for Pseudomonas. Which means that we will be starting on TOBI this week. I'm so bummed her last visit was all clear, I hate TOBI as much as she does. Breezy doesn't complain about it anymore but it takes forever and I just hate it for her. But on the bright side we can do it at home so that's always a good thing.

Cystic Fibrosis Foundation Meeting

2010-05-28T13:44:00.000-04:00

On Tuesday we also had a meeting with Dana & Claudia from our local Cystic Fibrosis Foundation. The meeting went very well and I am pumped to get going on this Great Strides Walk. Dana is coming down for a visit next week also so that we can secure a location and really get some progress made. We have tons of great ideas, I know that this is going to be a great walk.

CF Clinic Update- May 2010

2010-05-27T09:20:00.001-04:00

Breezy had her clinic appointment on Tuesday and as usual it felt like we spent the whole day at the hospital. That being said we came home and if we come home than I'm a happy camper, because it could have been worse. Everyone is happy with her growth since her diagnosis she has gained and gained weight she is currently 41 lbs which puts her in the 25th percentile for her weight and height. The want her in the 50th but as long as she keeps gaining we should get there. Her goal weight for the next clinic visit is 43 lbs, so we need to make sure that she eats 1900 calories a day. 1900 calories a day is about 500 more calories than the average 5 year old.

Breezy did the pulmonary function test at this time she is still practicing how to successfully complete the test so the results are not as reliable as they will be in the future.They also took a throat culture and we should be getting the results within the next couple of days.

The topic of concern at this visit was nasal polyps, it looks as though Breezy has a nasal polyp and it is blocking her left nostril. So we are now on another antibiotic, a new nasal flush and increased Nasonex. This is all in hopes that we can clear her nose up so that we don't need to have the dreaded sinus surgery.

We got some awesome news while at clinic, the SB 166-Enzyme Bill will be going in effect in July. This means that CF kiddos in the state of Florida have the right to carry their enzymes on them at school. Just like kids with asthma get to carry their inhalers. I'm sure that I will still have Breezy go to the nurse at lunch just to make sure that she is taking them everyday without forgetting but if the class has a snack she won't have to leave the room anymore.

All in all the visit went well and I will keep you updated on any changes.

Current Meds

2010-05-22T22:19:00.000-04:00

It had been a while since I have posted Breezy's current medications and treatments, this may change on Tuesday because Breezy has her CF Clinic. Please be thinking of her on Tuesday and wish us a clean throat culture. Because we love clean cultures!! Breezy has been slightly more congested this week but not fever and her mucus is clear at the moment so I'm hoping that she is just having some problems with all of the pollen.

Current Medications:

Zenpep
ADEK
Nasonex
Albuterol
Zithromax
Prevacid
Pulmozyme
Hypertonic Saline

Current Treatments:

The Vest

So that is what Breezy is doing right now.

An Evening Swim

2010-05-22T22:09:00.001-04:00

Today was a lazy Saturday, we didn't do to much of anything. I think that we are all in great need of the summer arriving as soon as possible. To say that this family is exhausted would be an understatement. It took us all day to get the energy to open our back door and take a swim. The girls really do enjoy swimming under the moon light, so that is a plus when you have no motivation : ) It was so relaxing to hear them playing while I read my book, nothing compares to hearing the kiddo giggle and play. Sometimes it is hard to remember how to be completely carefree, but kids have it down to a science. They simply don't get worked up about to much. So the day wasn't a complete wash the kids had fun and i guess that is all that matters, we don't have to be overly productive everyday.

Relay For Life

2010-05-22T21:57:00.003-04:00

Last weekend we went to our local Relay for Life, Haylie is part of the student government at her school so she walked with the student government team. Breezy and I walked with them and as we walked we thought of my grandma. My Grandma Bernie lost her battle with ovarian cancer on Feb. 24,2010 she had such a long and painful road but it is still hard to think that she is gone. I know that she now has a chance to rest after a long 7 years of doctors, hospitals and chemo. Rest In Peace Grandma we love you.

2010-05-20T22:41:00.001-04:00

Zenpep

2010-05-19T11:14:00.004-04:00

Breezy has been waiting for months to get a prescription to Zenpep. And it finally happened : ) She was given samples when her Creon10 seemed to stop working as well as it had in the past and she fell in love with them right away. It is so funny to think that a 5 year old would be excited about a prescription but her stomach hurts everytime she eats and the enzymes put an end to the pain. The Zenpep caps look like huge horse pills in her little hands but the are pink and white and oh so cool to Breezy. We had to wait a few months to get an actual prescription because Zenpep is newer that some of the other medications that she has been on and were not automatically approved like her creon or ultrace enzymes. But she has them now and she couldn't be happier. She tells me they work better..is anyone else using Zenpep?

Wordless Wednesday...

2010-05-19T00:00:00.002-04:00

Wordless Wednesday...

Have you heard?

2010-05-18T23:19:00.002-04:00

Breezy's Bravery will be hosting a Great Strides walk in our town in fall. If anyone is interested in volunteering, creating a walk team or raising money then let me know. Also there is a new Donate button in the right side bar if anyone would like to donate $1.00 to for a Great Strides Shoe I will be posting them on the site with names. I know it is a little early to but it is never to early to raise money for Cystic Fibrosis Research.

Here is a shoe sample.... you know you want one : )

You can visit Breezy's Great Strides Page at:

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6689&idUser=370884

Hello Stranger.....

2010-05-18T23:02:00.005-04:00

It's been a while since I have really been keeping up the blog, but summer is coming and life will be a lot less busy. Breezy will be graduating kindergarten on June 9th and I simply can't believe it. I am happy to report that sending her to school with all of the other children or 3 foot tall towers of germs as I call them, turned out to be the best decision. Breezy thrived in school and my fears of her getting sick by going were put to rest. I guess that sometimes you just have to jump in feet first and try things even if they might scare you. Because kindergarten was the best thing that we could have done for Breezy.

So it should be nice to have sometime with her just to relax and not have to worry about the rush of the school schedule. Also this summer we are going to be getting ready for this years Great Strides, we are going to have a a fall walk. Walking in the fall should be great for us Floridians because last year it was hot as could be. If anyone has ideas for fundraising let me know, we are still new to Great Strides so any ideas would be greatly appreciated.

Breathe Easy Beautiful Ladies :

2010-05-04T09:44:00.000-04:00

This is always the hardest part of being in the CF blogging community for me and is in part the reason that I have been less active the past few months. It just breaks my heart to see such wonderful young people lose their battle with Cystic Fibrosis.

Breathe Easy Beautiful Ladies:

Eva Dien Brine Markvoort- March 27th

http://www.cbc.ca/video/player.html?category=News&clipid=1484276671

Emily Haager-May 1, 2010

http://www.pipelinetoacure.com/2010/index.php

I have been so bad about blogging

2010-04-24T15:55:00.000-04:00

I'll be back soon I just need to get somethings together, we have been so busy around here. Once I went back to school that put a damper on the blogging. But the semester will be over soon and hopefully I can keep the blog updated regularly.

Merry Christmas Everyone!

2009-12-23T11:41:00.001-05:00

We hope everyone has a safe and Merry Christmas. Breezy can hardly contain her excitement. We will be having a wonderful travel free holiday, I'm so happy to stay home and relax this year...we need it :)

Last week Breezy had "Polar Express Day" at school and all of the kindergarten children wore their pjs to school. It was the cutiest thing ever. All of the kids were such great sports imagining that the line of chairs was a train. It was such a special day, after lunch the kids found a bell on their chair and were quite suprised. Breezy thinks that Ms.Clause put the bells there because Santa was to busy.

My Dream For CF-Video

2009-12-19T23:38:00.001-05:00

This video is from the Cystic Fibrosis Foundation, It is very touching please share it with others.

Wordless Wednesday !

2009-12-08T21:58:00.001-05:00

Wordless Wednesday!

CF Update

2009-12-08T21:03:00.000-05:00

Just thought I would give everyone a CF update, Breezy has been doing very well. Aside from the slightly higher than average congestion she has been experiencing sporadically the past few weeks. Her last clinic appointment was November 20th and all was well with her cultures. She had another shot at the PFT machine, yet still at this point we are not getting accurate readings but lots of great practice.

Breezy's Current Meds:

-Creon 10 (She can swallow big pills now..yeah!)
-ADEK
-Nasonex
-Albuterol
-Zithromax
-Zantax
-Amoxicillin
-Pulmozyme
-Hypretonic Saline

Current Treatments:
- The Vest

No TOBI !!! She is really excited about that, she is not a huge fan of tobi and the less she has to do the happier she is. But there is Breezy's CF update I hope that everyone is keeping germ free this cold and flu season. I know how hard it can be to keep a kiddo clean but we try as hard as we can.

Breezy's Christmas Wish....

2009-12-08T20:44:00.003-05:00

I over heard Breezy on the phone with her Grandma Bear explaning how she wanted everything in the world for Christmas. I guess that is what you say to grandmas because she has only asked me for a few things. I was very suprised that the one thing she wants most is educational. Breezy is currently in kindergarten and has developed a love for reading. So she is asking Santa to bring her a Leap Frog Tag Reading System.

Which I'm sure he will be more than happy to deliver. The tag is a pen that you upload books to and if the child is having trouble reading a word it will read it to them. Also so cool for parents you can track you childs usage and progress online. There are so many cool books that you can buy for it and I really think that Breezy will enjoy this one. As smart as she is I really never expected her to say "If I only get one gift I want books" She is such a smart cookie and mommy is proud.

Other gifts requested include DS games, Littlest Pet Shop animals, a Doll and the holiday favorite of the masses Zhu Zhu Pets. The Zhu Zhu Pets are going to be the death of me. Most likely because I get mowed over by an 80+ Floridian grandmother who wants them more than I do...lol : ) I have been looking but by no means am I going to stand in line for hours or stalk toy store employees for information. If you don't know what I'm taking about the are robot hampsters that run through plastic tubes. But if you remember Breezy wants to be a vetranarian and has some how convinced me that the Zhu Zhu Pets will be great practice for her future goals. We will see what Santa delivers on Chirstmas Day and hopefully all of the kids wishes come true.

Thanksgiving

2009-12-04T10:01:00.006-05:00

I Hope that everyone had a wonderful Thanksgiving! We had a small Thanksgiving this year everything has been so busy that we just felt like staying home for the holiday. Breezy's Grandpa and Uncle drove up to share the day. Of course we had lots of food, football and family.

Halloween

2009-11-06T09:39:00.002-05:00

We had a Halloween party and of course tons of fun trick or treating. Breezy was a Dalmatian this year and her sister was Cruella d'ville. They were the cutest. Breezy loves animals and wants to be a vet so every year you can count on her picking an animal costume.

Fall Fun !!

2009-11-06T09:33:00.002-05:00

Well we are busy, Breezy starting school has been such a schedule filler. But we have been having so much fun doing fall activities. There have been too many fall festivals to count and a wonderful trip to Tampa .Hopefully I will be able to find the time to update this blog more frequently but her are some fall photos for now.

September CF Clinic

2009-11-06T09:03:00.004-05:00

Breezy did a great job at her September CF Clinic. I feel like we are there all day on normal clinics but this one was twice as long because it was her yearly check up. They did all of her blood labs, a throat culture and she had a chance to practice on the lung complicity machine. She thought it was great because she got to try and blow candles out. The things that amuse kids are so simple :) All of her labs came back great, vitamin levels are perfect, no terrible bacteria on the throat culture and her weight is in the 25th percentile up from the 10th so everything is going in a good direction.

One Year Ago Today...

2009-09-06T18:05:00.006-04:00

One year ago today Breezy was diagnosed with Cystic Fibrosis, this has been a rough year but I think we are all getting the hang of the med routines, doctors visits and of course watching Breezy eat ridiculous amounts of salt...lol ! We love you Breezy and you are the bravest little girl I know!!

Kindergarten

2009-09-06T17:58:00.004-04:00

Breezy finished her first full week of Kindergarten on Friday. She love it, me on the other hand miss my baby. I'm so proud of my big girl though, she is so smart and I'm glad that she is in school. Only one week in and she is making tons of new friends. One of which is a boy names Aaron who she was holding hands with. She said " When I told my dad it gave him a big shock." All in all school is going well and I really love Ms.Smith her teacher and nurse Michelle who Breezy visits for her enzymes.

Breezy Lost Her First Tooth

2009-09-06T17:54:00.003-04:00

Breezy lost her first tooth last week , she is so happy and feels like such a big girl. The tooth fairy came and gave her a nice stack of cash. She pulled it out all be herself after about a week of wiggling. I love her toothless smile : )

Gabe is Here!!

2009-08-19T14:04:00.003-04:00

So I'm an Aunt again, to the most handsome little man ever GABRIEL!!! Gabe was born August 3rd at 10:13 a.m. 8.9lbs 20.5 inches!

The Granddaughters

2009-08-19T14:00:00.003-04:00

My beautiful niece Lauryn came down to visit this summer so while I had all of the families granddaughters together I took some photos!!

Koa

2009-08-19T13:55:00.003-04:00

Breezy's wish for a puppy came true after she had a puppy themed birthday party. A friend of ours came to the party and thought this poor kid needs a puppy :) So meet Koa!! Breezy's new hypoallergenic Bichion Frise, she is in love!!

Tampa

2009-08-19T13:44:00.004-04:00

This summer we took a trip to Tampa where Breezy's Grandpa & Uncle live and we had such a great time.3D Movie, Shopping, Ice Cream, Poker..lol . Breezy loves to visit museums and Tampa has a great one Mosi. She had so much fun!

I'm not lazy...Just busy :)

2009-08-19T13:32:00.004-04:00

So here I am trying to play catch up with Breezy's Blog, I have no idea where to start because we have been so very busy. This summer went by so fast!

We had a wonderful 4th of July on the beach with tons of our friends!!

Oh course it wouldn't be summer without swimming!!

Breezy's Sister Haylie is going to live with us this school year!

We met our good friends Baby Alyson,she is so beautiful.

And we did lost of shopping, that's what you get when you have girls :)

Happy 5th Birthday Breezy!!

2009-06-30T18:00:00.004-04:00

Breezy turned 5 on the 26th , we had a wonderful pool party filled with family, friends and tons of fun. I can not believe it has been 5 years already, my baby grew up over night. But what a wonderful little lady she is turning out to be. Breezy is such a strong, smart, talented, beautiful and caring child. It makes me so proud to be her mommy and to be able to watch her grow. Happy Birthday Breezy!!! Mommy loves you...xoxo

Hypertonic Saline

2009-06-30T17:27:00.004-04:00

On the 17th Breezy had her CF Clinic appointment, everything went very well including her throat culture that came back without pseudomonas....woohoo. She is still culturing staph however. Her doctors say the staph bacteria in her lungs is just one of those things most CF patients culture. So in other words I guess we are calling that normal at this point. Breezy has been swallowing her enzymes which as made her tummy a little backed up it is so strange to go from oil to needing miralax in a matter of days, but I guess that is just CF for you.

While we were at the clinic Breezy weighed in at 37 pounds. In case you were keeping track she has gained 9 pounds since September 2008 when she was diagnosed. Breezy is happy because she wants to get out of her car seat and in to a booster before she starts kindergarten. She is worried about the big school kids calling her a baby if they see her car seat so hooray for Breezy only 3 more pounds to go!!!

Breezy was prescribed Hypertonic Saline and we just received in in the mail this week. She thought it would be great because the doctors told her it was like very salty water. But Breezy thinks it needs more salt....lol and it scratches her throat. But oh man did she cough up some mucus, it was great. Better out then in :)

Breezy doing her first Hypertonic Saline treatment at her CF Clinic.
She put a tissue under her nose plug so it wouldn't pinch to hard.

Busy Breezy

2009-06-06T16:41:00.003-04:00

Breezy has been a busy lady this week. It has been raining here for about 2 weeks so painting and worksheets have been a must do project. Breezy loves to paint so she been content.

The rain stopped for a few hours so we took Breezy to a Home Depot kids workshop. She had a great time building her Father's Day tool box.

Haha Breezy got her face painted...she is a Dalmatian. It took me a while to get the paint off of her face.

Where does the time go....

2009-06-02T23:08:00.004-04:00

We have had the busiest day, week, month and year. But I think we are going to get a chance to breath at least for a day or two. We just got home from Breezy's Uncle Brandon's High School Graduation. Breezy had such a great time at the graduation, I know it sounds weird that a four year old would enjoy a long 2 hour ceremony sitting in a large civic center. But Breezy got herself a huge tub of salty popcorn and screamed, whistled and cheered for her Uncle Brandon. At the end all she wanted to know was if he could see her. I'm sure he heard her but even then from where he was she would have been the size of a penny.

Congrats Brandon we are all so proud of you!!!

While we were in town we attended Aunt Meagan's baby shower. Breezy already loves baby Gabriel ! She looks at his ultrasounds and talks to Aunt Meagan's belly & kisses her cousin. She is going to be a great big cousin. Gabe is going to be the first grandson in our family and we just can't wait, he will be here in just a couple of months.

Now we are home and trying to get a little much needed rest and relaxation. While we love to travel and I know busy people get more done, busy people also get tired : )

GO BREEZY!!!

2009-05-27T13:12:00.003-04:00

Breezy has learned how to swallow her enzymes!!! Wow that made eating so much easier :) So a big congrats to Breezy for swallowing pills at age 4, I think I was about 12 when I figured it out.

Pre-K Graduate

2009-05-23T12:59:00.003-04:00

Breezy Graduated from Pre-K this week. I can't tell you how proud I am, she is growing up way to fast. It is so shocking that she is going in to kindergarten in a couple of months.

Breezy's First Day Of Pre-K

Breezy's Last Day Of Pre-K

Great Strides 2009!!

2009-05-18T21:33:00.005-04:00

Great Strides 2009 was a huge success for the Breezy's Bravery Team! This being our first year I'm happy to announce that Breezy's Bravery was recognized as the top fundraisers for our walk! A huge thanks to everyone that donated to our team and the cause. We had a great turn out and I just have to mention that Breezy, Nate and I have wonderful friends! I can't wait to do this again next year and raise more money for Breezy and all of the CF families.

The Last 2 Weeks!!

2009-05-13T16:52:00.008-04:00

The last 2 weeks have been so busy and its not over yet, Breezy's Great Strides walk is this Saturday!!! I had some great reasons to be a lazy blogger and here are just a few :)

April 26th
I took the last set of Maternity photographs for my friend Kara the day before she delivered.

April 27th

Kendal Renee was born and I had the pleasure of taking some photos of the new baby girl!

April 28th-April 30th
We took our flight to Greenville SC for the Artistic Union Event!! We had a blast and raised money and awareness of CF. Photos of Artistic Union coming soon!
While I was in Greenville I took some photos of my niece Lauryn!

May 1st
We returned home from Greenville and My sister in law came to visit. While she was in town I also photographed her and took her to get a 3D ultrasound of my nephew Gabe.

After all of that excitement comes the catch up game. Get all of my work done, go to school, get ready for the Great Strides and just your general run around and get things done. I feel like I have been non stop for a month and May is going to much more packed than April. Wish me luck...lol

Happy Mother's Day!!

2009-05-09T19:48:00.002-04:00

I Hope everyone has a wonderful Mother's Day!!

Breezy's Bravery T-Shirt Party

2009-04-27T08:43:00.002-04:00

On Saturday we had our friends over to make Breezy's Bravery T-shirts for the Great Strides walk on May 16th. I had so much fun.I am really glad that we decided to make shirts this year. Every one is so cute and unique. People put some love in to making these and I love them.

I'm not sure how any people are on the team for the walk but there were 22 wet t-shirts hanging all over my house so that is a good group. And that is just the beginning. Everyone has been so helpful and supportive, I have great friends :)

This week has been so crazy with the doctors apts, cf clinic, tshirt party, and getting everything ready and caught up because we leave tomorrow. We are going to Greenville for the Artistic Union Benefit and I simply can't wait. In fact yesterday morning Breezy asked if she could go to sleep so that she could get to Greenville faster. I feel so blessed to have everyone doing this for my daughter. Our whole family appreciates everything.

CF Clinic

2009-04-27T08:01:00.002-04:00

Breezy had her CF clinic on Wednesday, we drive about an hour away to get there so it is always a long day. I am hoping to get the result from her culture today, so I know how we are doing. Breezy wants to defeat the mucus! When we saw the doctor they decided to add cipro and bacterium to Breezy's med schedule due to her week long bronchitis. The goal is to prevent her mucus bacteria from multiplying because of her coughing moving everything around in her lungs.

Current Meds:

Source CF multivitamin
Creon 10
Nasonex
albuterol
pulmozyme
tobi
zithromax
cipro
bactrum

So I'm calling to get the culture results today and I will keep you updated.

The Littlest Heroes Project

2009-04-18T23:35:00.004-04:00

Breezy was able to participate in a Littlest Heroes Project Photo Shoot. The amazing and talented Dana Goodson was our photographer and I could not be happier with the way the photos are coming out. We only have a few right now and should be getting more in a couple of weeks.

A little about the Littlest Heroes Project:

The Littlest Heroes Project is a non-profit based organization founded in January 2008, made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. The Littlest Heroes Project provides you with a complimentary photo shoot for your hero and family.

Bronchitis Update

2009-04-18T23:24:00.004-04:00

I am happy to report that Breezy has been fever free since Thursday night. She still has a wicked cough and she got a bit of mucus out tonight. The mucus was cloudy and yellow so I'm not sure what that means at this point, all she ever has is clear "super glue" mucus. I call it super glue because it is the stickiest thing you will ever touch. Breezy has a CF clinic appointment on Wednesday so I'm just hoping that all is well until we can get up there.

After her chest x-ray, she has a 102.5 fever but is still all smiles :)

Easter Day!

2009-04-18T23:10:00.004-04:00

Breezy had a great Easter there were about 200 eggs all over the house. She had some help from Haylie, Aby and Ayden but there were still so many eggs that I had to empty their baskets a couple of times.

Breezy is really in to the Littlest Pet Shop toys so when the Easter bunny left some in her eggs she was ecstatic. Nate, Myself and Breezy's grandparents have been going crazy with the pet shop toys. We find it adorable that she wants to collect something so I get phone calls all the time " Does Breezy have the little armadillo? "

When the egg hunt was over she began asking questions "How did that tricky bunny get in our house?" and "Where did he get all of these eggs from , Target?". To which I reply the universal, I don't know how to answer your questions answer "Magic!"

All in all it was a wonderful Easter filled with fun and apparently magic..lol

Quick Update

2009-04-16T21:01:00.003-04:00

I have been bad about blogging this week but Breezy has Bronchitis. We have been back and fourth to the doctors. The have upped her dose of zithromax and great news about her chest x-ray....it was clear. She has been coughing all week and she sounds very congested. She hates being out of school so we have been doing lots of school work at home this week. I love to see her eagerness to learn new things. Breezy has had a fever everyday this week, if we can keep her fever free this weekend then she can return to school on Monday.

I will be back tomorrow to add photos of Easter.

Easter Egg Hunt!

2009-04-09T00:06:00.008-04:00

I took Breezy and Haylie to an Easter Egg Hunt that my mommy group put together on Tuesday! It was so much fun, between all of the moms we must have had a million eggs. I have a really great group of friends, if you say please bring 24 eggs more than likely each of us brought 48 eggs. I love having such wonderful people around, people who don't just do the minimum.

Anyway the kids were great and they all get along so well. The girls made out with a lot of loot :) My favorite part of the day was watching the little kids pick up eggs....have them fall out of the basket and get all excited when they found the same egg all over again. Sometimes I wonder at what age simple things like a recycled egg get to be unexciting.

Thursday Breezy will have an Easter celebration at her school. She made bags of Easter goodness for her friends. The bags were made a few days ago and she keeps asking...can I bring them to school today?

All Things Baby!!

2009-04-08T23:55:00.004-04:00

This last month has been baby..baby...baby!! On Sunday I hosted a baby shower for my friend Kara who is due to have a little girl in May. It was tons of fun and everyone had a great time. I had to get creative on the decor because we chose to use guitars, pink and brown. I had trouble finding anything so I got my glue gun out...lol and I think everything turned out just perfect.

On April 2, 2009 my beautiful childhood friend Liz gave birth to Deagan. He is the most precious little baby. I'm so happy for Liz , Bobbie and their whole family.They will be such wonderful parents and Deagan will have so much love in his life. Congrats Liz!!!

I'm so excited to report that my sister in law Meagan just found out that she is expecting a little boy. Everyone is so excited because he will be joining a family of 3 granddaughter. I have already started to buy him things, I only get to purchase girl stuff so I have been having a great time looking at all of the boy items.

Artistic Union

2009-04-06T15:02:00.006-04:00

I'm so impressed by every ones support, I hope that everyone knows that I am so grateful for everything!! Breezy's aunt Ginger and some of our beloved Greenville SC friends have put together this amazing event.

Artistic Union is an event that will satisfy all of your senses. Enjoy the energetic artistic live painting of Ric Standridge. Watch as he creates unique and vibrant pieces of art right in front of you. The inspiration for Ric’s paintings will come from his interpretation of the astonishing live music performance of Angie Aparo and Martin Lesh. The show will be enjoyed in Greenville’s beautiful Zen. This show is being held to benefit Breezy’s Bravery and the Cystic Fibrosis Foundation. 30% of the Art Auction proceeds and a percentage of ticket sales will be donated. Please join us in helping create Cystic Fibrosis awareness while having a delightful evening filled with art, music, and fun.

$35.00 Admission includes:
Live Concert
Art Performance
Hor’dourves
Art Auction
guest appearance by Brianna “Breezy” Shiflett
for tickets contact the Peace Center 1-800-888-7768

For More information Visit- http://www.artisticunion.org/

April Fools

2009-04-01T23:15:00.005-04:00

Well this morning Breezy got me good. I had no idea anyone told her what April Fools is or that today is April Fools so when she told me there was a spider in my hair I quickly and frantically tried my hardest to remove the spider. Then with an adorable chuckle Breezy yelled April Fools!!! I was glad the spider was imaginary but my sweet, adorable, loving daughter tricked me and she did a great job...lol

This Still Amazes Me

2009-04-01T22:49:00.007-04:00

How in the world can anyone eat this much salt. It still amazes me that Breezy eats this stuff. It makes me cringe to see how much salt she uses, but she eats it like there is no salt. Before Breezy was diagnosed we would not allow her to use this much salt. So when her doctor diagnosed her and said in front of her..." She can eat as much salt as she wants, you can even give Bri her own salt shaker" I knew that was the end of the "thats to much salt" discussion. Because now if I say no more she is quick to remind me Dr.S said I can have as much as I want.

Do you or your CF child eat a lot of salt?

Some CF Salt Facts:

CF is a genetic disease that affects the body's epithelial cells, which are found in many places, including the sweat glands, the lungs, and the pancreas. An error in these cells causes problems with the balance of salt and water in the body.

People With CF lose a lot of salt in their sweat, especially during hot weather and when they exercise. A good way to replace this salt is by adding salt to food and eating salty snacks.

Spring Is Here

2009-03-22T23:27:00.005-04:00

Well the weather was a lot warmer this week, until the weekend that is. But on Friday Breezy got a chance to plant some flowers. She has waiting all winter to plant flowers. So I took her shopping and she picked out pink and purple flowers. It was such a nice quite day just doing some planting and spring cleaning.

I think our next spring project will be making some bird feeders. Breezy found some pine cones last week if we add some peanut butter and birdseed we will be set. We do want to purchase some pre-made bird feeders, we have so many beautiful birds around the yard and we all love to watch them.

I can't wait for the weather to be warm constantly this 87 degrees one day and 65 degrees the next is getting old. And I think the sunlight would do us some good Breezy and I are looking like ghost (yes I'm even paler than normal). The pool and beach are calling my name.

The only thing that I'm worried about is the looming first day of kindergarten which will inevitably follow that wonderful warm weather. But I have about 6 months to prepare myself for my baby growing up, so I'm sure I'll be fine.

We Reached $1000.00

2009-03-21T23:28:00.001-04:00

Thanks to everyone who has already donated to The Cystic Fibrosis Foundation on behalf of Breezy's Bravery Team. We have reached our goal of $1000.00 , this being our first year I'm very excited and we still have about a month and a half until the walk. I think we will exceed our goal. Again thanks for all of the support :)

Happy St.Patricks Day!!

2009-03-17T14:55:00.004-04:00

I hope that everyone is having a wonderful St.Patrick's Day. Breezy had a little party with her play date friends this morning before school. She had a great time in the playhouse and ate some lunch. She was so cute I think she found everything green that she owns and wore all of it. Yesterday we went ribbon shopping to make a St.Patrick's day bow. She picked out this cute clover patterned one and of course green, her bow turned out adorable.

Nature Walk

2009-03-15T20:26:00.006-04:00

This week was a busy one, a friend of mine had to get surgery out of town so I watched her daughter and took her to school all week. Yesterday we all took a trip to the park and played for a while. Then I took the girls on a nature walk, which I must admit was lots of fun.

We took about an hour to just took around and see what we could find.

Animals & Insects we found:
~Turtles
~Ducks
~Cardinal
~Fish
~Butterfly
~Spiders
~Beetle

They found a pile lots of leaves on the ground and threw them around for a while. Dug around in the dirt and found the perfect pine cones. It was nice to just walk around and relax for a while. Everyone had a great time. And after a long walk ice cream is a necessity.

We came home for a slumber party,ate junk food, watched movies and painted nails . All in all a wonderful day!!

Our Summer Pet is Back

2009-03-15T19:23:00.009-04:00

Well we have an alligator that lives in the pond. He is a seasonal fellow who leaves during the winter. The weather has been warm this week and guess who showed up. How do we know this is the same alligator? Well if he is underwater and you clap he will pop up and come to visit. Don't worry we are very careful and Breezy is never out our screened porch. And the alligator stays on the other side of the pond or in the water. But I thought you guys might like to see him....he is BIG!!

Great Strides

2009-03-15T18:13:00.006-04:00

I have been busy trying to get all of our Great Strides plans organized. This is our first year, I have so many plans for next year now. I just don't have the time to get everything together this year, the walk is in May and I'm crunched just getting normal stuff done....lol But after this years walk I will be planning and preparing for Great Strides 2010.

I have created an email that will be going out to all of our friends and family in hopes to get more members to walk with us. It is so cute and it includes links to the Great Strides, CFF, and of course this site. The video is also on the email. I wish I had a still image to so you guys.

I also started a Facebook Cause, maybe we can get people who know people who know people involved :) I hate that my little Breezy has CF but she is such a great little girl and everyone just loves her that I feel like we can do great things together.

If you have a Facebook and would like to be our friend just CLICK HERE

Thanks to everyone who has already joined the team and donated we really appreciate everything.

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

Crud Update

2009-03-15T18:05:00.002-04:00

Well I'm happy to report that besides her deep voice and quite a bit of mucus out put Breezy has yet to catch the crud. By the way getting the mucus out is a plus in my book. So I'm actully happy she has been getting rid of it, better out than in...right.However Nate did give me the crud and I keep it for much longer than him. He was over the whole thing with in 2 days. I'm almost better but I still have a little conjestion. Still there are no complaints on my end because if Breezy is good then we are all good.

The Crud

2009-03-09T18:36:00.003-04:00

Well the last few days Breezy has been talking with her deep voice and she has been very congested. We have been through a whole box of tissues this weekend. I'm not too worried about her but Nate came down with the crud this morning and has been feeling terrible all day. So I hope that he keeps it to himself because Breezy doesn't need to catch anything and I'm too busy to get sick.

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

A Visit with Grandpa

2009-03-09T18:19:00.005-04:00

My Dad lives about 2 hours away so we try to meet half way every couple of months. On Sunday we had a Grandpa day. It was fun we all went out for a great lunch at a Brazilian Steakhouse which was the first time Nate, Breezy and I had ever been to one. In case you have never been they cook tons of meat on huge skewers and bring it to your table. Beef, Pork, Lamb, and Chicken in different cuts and flavors. It was so yummy and filling...but this place is in no way accommodating to a vegetarian. We later ate some ice cream, watched a movie, Breezy took a train ride. We really just had a great time hanging out with each other.

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

Friday Fun

2009-03-09T17:56:00.009-04:00

Well Friday was a fun day Breezy and I ate lunch together. At Subway, why because Breezy is addicted to the 5...5 dollar...5 dollar foot longs. Which I think is great because she will eat quite a bit of food there. And what CF mom doesn't like any food there kid will eat, having to struggle with maintaining and gaining weight is a huge concern in our house. So Woohoo for Subway!!

And of course when you have some time to kill before school you find a local store that you can try hats on at. Breezy and I tend to lean on the dorky side. So her are some adorable photos of her playing dress up at the store. The one in the pirate hat just cracks me up...lol

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

Goodbye Tobi & Colistin

2009-03-08T17:39:00.001-04:00

Well at least for the next 28 days, Breezy finished last months round of Tobi & Colistin. Which cuts our treatment time down considerably. I can't wait until her CF clinic in April so that we can find out if this round of such aggressive treatments took care of the pseudomonas and staph that Breezy cultured at her last clinic. I really wish that we could just do a culture now so that we can find out if the meds are working. When we go to clinic she will have been of the levaquin, tobi and colistin for about 3 weeks.

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

Tuesday 10

2009-03-03T14:25:00.010-05:00

Some of the blogs I read do fun things for each day of the week like Cara who does the Tuesday 10. I thought this was a cute idea but I can never think of 10 things. But today your in luck because I came across some really fun stuff this week.

10 Awesome bits of info. or cool things from the week.

1. Thanks to Cindy at Cure CF for Reilly I fell in love with microwaveable sterilization bags. I was boiling Breezy's Nebs twice a day, I know that sounds crazy because I could just clean them but Breezy has reoccurring bacterial infections and I want to make sure that we are killing all the germs. Well these bags have saved so much time and I love love love them.

2. Where can you find the sterilization bags? Well that is another awesome discovery that Cindy made Medi-Simple Shoppe this shop is owned by a CFmomma so you can find all kinds of cool time and space saving CF goodies. I have my eye on the The Pari Treck Compact Compressor.

3. The IFRD1 Gene. "The IFRD1 gene appears to play a role in the severity of cystic fibrosis lung disease through its influence on neutrophil effector function." To Read this Article Click Here.

4. Well this was really my number one, I found out that my momma is healthy. She had a little scare but after a few test it turned out to be fixable and not to bad. Which was such a relief because she is taking care of my grandma who is going through chemo, and everything with Breezy's health I'm not sure what I would have done if my momma got sick also. So yeah for that, I love ya mom!

5. Breezy got some ribbons at gymnastics this week. She was so happy and I could not have been happier for her. She loves gymnastics and is doing very well. I love to see her happy and sleepy when she gets home...lol

6.We found the school that Breezy will attend next year. I'm very worried about having to change to full time school and have her gone all day. But she is so excited and can't wait to be a big girl. Kindergarten here comes Breezy.
7. Breezy loved celebrating Dr.Seuss' Birthday. Her class made a cat in the hat, read Dr.Seuss Book and ate Green Eggs and Ham. Green Eggs and Ham was my favorite book when I was little and Breezy love it too. She told me that we can make a great meal now because she has the recipe.

8.Breezy finished her levaquin woo hoo one down how exciting!!

9.Breezy's Bravery Great Strides Team is growing!! We are getting very generous donations that I can not thank everyone enough for. But thanks to Briana Kaya, Shelly Adams, Liz Walden, Papa, Aunt Ginger, Annie Porter, Grandma D, John Chason, Michelle Emden, Diana Dailey, Crystal Colletti, Louise Smith, Kara Tishler and every for all the wonderful support.

1o. We had such a great week with our friends and family. A very busy week that was full of fun.

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

2009 Great Strides Video

2009-02-20T18:32:00.009-05:00

If you would like to join us for our walk on May 16,2009 or make a donation to Breezy's Bravery Great Strides please CLICK HERE and visit the CFF Site.

Thank you for all of your support

Great Strides Update March 1, 2009

I just wanted to thank everyone for the recent donations Breezy's Bravery has raised $640.00 so far. This is our first year and I'm so happy that so many people are going to join us for the walk. We have had such a great response the team is growing and Breezy is getting so excited. Breezy knows that we are walking to help raise money so that scientist and doctors can try to make new meds or hopefully cure CF. And who wouldn't think that is just great. Before the walk we are going to have a Breezy Bravery party to make team shirts and just get together before hand. I'm so excited. Thank you so much to everyone we can feel the love & support.

The Song Used in the video is Lullaby by The Dixie Chicks

Oldie but a Goodie

2009-02-17T21:50:00.001-05:00

Breezy telling a story with her Aunt Ginger.

Story Telling Sept.2008 from jessica bear on Vimeo.

Just an Update

2009-02-17T21:19:00.007-05:00

Well I am happy to report that we are successfully making it through our colistin eflow treatments with ease now a days. So the new treatment schedule is going much better and faster without crying and arguing...lol Someone pointed out to me that my counter looked like it belonged in a hospital so i thought i would take a few photos of all the supplies. Where do you keep your supplies? Are they in one spot or all over the house. Ours are in one organized place on our counter but of course the vest is elsewhere and the nebulizer moves to the current comfort spot.The comfort spot moves from the master bed to the living room depending on the day.

I also took a photo of her current medications. Most of these are taken twice daily with the exception of zithromax which is 3 times weekly, pulmozyme is once daily, and albuterol is once daily.

The cool looking round blue thing is her new eflow and I really love this machine. The treatment takes 4 minutes, life would be so much easier if all of her nebs took 4 minutes.Well we got this med schedule down pat, so I'm sure that the docs will call any day and change it...lol it always seems to change when we get it down.

Breezy has been feeling good the last few weeks and has been very active. I really think these meds are working.Breezy says that the new meds are defeating mucus. She has been full of energy I think that one of the meds has something to do with it. Has anyone else felt energetic on Nasonex, Levaquin or Colistin?

Breezy sounds a bit congested today so we are hoping its just some mucus and not the start of her getting sick.

Cystic fibrosis gene cure closer

2009-02-17T20:34:00.004-05:00

I just read this article about gene therapy US researchers are working on.The successful development of the gene therapy could cure CF. In the UK they are planning to start a large scale clinical trial this year.The hope is this gene therapy that replaces the defective CF gene which disables or destroys a protein known as CFTR will result in a cure.

If you would like to read the article CLICK HERE

I hope that the clinical trials prove to be successful. There is not a day that goes by that I don't wish i could just make it all better for my Breezy and all the other CFers.

Oh the Meds

2009-02-09T21:04:00.005-05:00

I just wanted to give everyone a quick update on Breezy's new meds. Like i said last week the levaquin is still going very well. And the colistin is improving.Every time(twice a day) she uses the eflow with a little less resistance. We haven't finished a full session with complete ease yet but we are getting there.

Breezy calls the colistin the pancake medicine. She thinks it smells like pancakes, has anyone ever notices that or is it just Breezy?

Thanks a bunch to every ones comments about the levaquin, colistin and eflow. I really appreciate all of the advice.

More Valentines

2009-02-09T20:53:00.003-05:00

Breezy begged me all week to let her sign her Valentine's Day cards and on Sunday I finally gave in. She picked out barbie cards and signed all of them. Her hand writing is really impressive. She is growing way to fast.Breezy also made treat bags with candy and valentines goodies for all of her friends. She is so excited for the party.Mrs.Barrow told the class they all get to play mailman on Friday.We signed up to bring strawberries...(i know all the good stuff was taken)but other than that we are all ready for the festivities.

This weekend!

2009-02-09T20:24:00.007-05:00

We had a great weekend with some of our friends that came down to visit. We all took Breezy to the carnival. She had a blast on all of the rides. And all of us took on an old western photo. I know is sounds dorky but it was tons of fun and we kept laughing at the photos, It was great. Breezy had so much fun that she has been telling everyone what a great time she had at the carnival.

Funny Dress up Friday

2009-02-09T20:20:00.003-05:00

Breezy's class was working on the letter F last week so on Friday the had Funny Dress Up Day. Breezy looked so cute she wore bright leggings and a dino t-shirt with huge flowers in her hair and a hot pink tail. And she won the dress up contest.

The Adventures of Levaquin and Colistin

2009-02-05T20:59:00.002-05:00

Yesterday I was able to pick up the levaquin at my local pharmacy early in the morning before Breezy even woke up. So she started the levaquin with her usual morning medications and again that night. And much to my surprise she loves it, this is the first antibiotic that i haven't had to fight with her about.

This morning Breezy's eflow and colistin was delivered. Oh man there was a lot in the box and this was the first treatment/med/machine that i have had to learn without a nurse.While it looked overwhelming it turned out to be easier than i thought. I was hoping for the same wonderful experience we had with the levaquin. Breezy was so excited that the eflow was new and exciting.....and then she tasted the colistin. Wow the reaction was terrible she hates it, the awesome eflow that only takes 4 minutes to deliver medication took over 30 minutes of crying. She asked me if i had one that tasted better. Poor baby, I think after a few days she will be fine with the colistin.

So tomorrow is Funny Dress Friday at Breezy's school so I'm off to help Breezy gather all of the crazy clothes she wishes to but together. The other day she told me she was going to put 14 socks and one shoe on her head..lol

Feeling The Love

2009-02-02T23:18:00.003-05:00

I love Valentine's Day so when Breezy's teacher sent home a note asking parents to help their child make a mail box I jumped on it. I scavenged through my house looking for the perfect box. I found a great thick children's shoe box and we got started. Nate cut a nice mail slot in the top while Breezy painted some wrapping paper.We were so impatient that Breezy and I blow dried the the paint.Then we hot glued the paper on to the box and added a couple of bows. Now Breezy is ready to receive love notes. I can't wait until next week so we can make all of the kids treat bags and yummy heart shaped food. Her class party is on Friday and it is also my Birthday so we will be parting all day :)

Grocery Shopping Breezy

2009-02-02T23:11:00.004-05:00

I try to take at least one photo of Breezy everyday. I want to remember everything because one day i woke up and she way 4 and next stop high school. So I'm going to be better about adding photos on here to share with you. On Sunday we went grocery shopping.

Have you ever seen a kid so excited about yogurt?

I spoke a little too soon

2009-02-02T16:31:00.003-05:00

Another CF mom Jada at Zoe for Life asked me if Breezy's doctors added any oral antibiotics and I told her no. Well about 3 hours after I responded to Jada Nemours called me and said that Breezy's Doctor decided to take a more aggressive approach against this Pseudomonas. So Breezy is going to be starting on Levaquin an oral antibiotic and also Colistin which is administered by eflow.

Both of these medications are new to us. Have any of you ever used the eflow? I was told that the eflow is like a nebulizer that is administered in about 4 minutes. Breezy is on the Tobi nebulizer and the company that makes the eflow PARI Pharma has been conducting clinical trials with Tobi 100. Tobi 100 would be used in the eflow instead of the normal nebulizer. The eflow takes about 4minutes and the normal nebulizer takes about 16 minutes. Which is absolutely wonderful and i can't wait for Tobi 100 to be available to the public, Tobi kids would be much happier.

She has a plan :)

2009-02-01T20:53:00.007-05:00

Breezy has a plan for the future she says:
“I think when I grow up on Monday and Tuesday I’m going to be a Veterinarian and on Friday and Wednesday I’m going to be a Children’s Doctor and on Saturday I’m going to be a Bubble Artist.”

We had a good week. Breezy has done great in school and has been feeling creative lately so she painted a nice rainbow for me. When I asked her what she was going to paint she said "I will give you a clue you take rain and sunshine and you get a……..Rainbow!!”

I am so excited that today is February 1st because that means Breezy can be on Tobi again. So we are going to add the Tobi to our other treatments. We added more chest therapy last week and I'm hoping that this round of Tobi will help clear up the Staphylococcus and Pseudomonas. So please think of my little Breezy and pray that we can take care of this.

A Huge Thanks To You !!

2009-01-28T22:38:00.003-05:00

My decision to blog about Breezy's CF was two part. One to hopefully create some awareness for CF and the importance of knowing you family medical history. But also to learn from other who have experienced CF.

But i really never realized how much each of you would help me deal with this difficult time in our lives as newly diagnosed CF family.I have found great encouragement, advice and support form all of you. I hope that you know how much i truly appreciate every little comment and email I receive. I find great inspiration form the CF patients and strength form all of their caregivers.

So Thank You for being you, for writing your blogs and sharing your stories. Most of all thank you for finding time to read Breezy's story and support us on this journey we are better for being involved in a community of such wonderful people.

Can You Believe This ?

2009-01-28T22:27:00.002-05:00

Two people stole over 62 thousand dollars from an adult CF assistance organization. If you would like to read the full story CLICK HERE.

I'm not sure what makes some people think it is acceptable to steal let alone from people with any type of life limiting disease. I'm sure that these two people found someway to justify this theft. And without unfairly judging them all I can say is this was just wrong. Think of the adult CF patients who went without or accumulated debt because 62k was taken from this organizations budget.

Thats Just Great

2009-01-26T11:47:00.005-05:00

Well I called Breezy's CF Clinic this morning to check on her throat swap results. I knew right away that something was abnormal because the lady who answered the phone had to get a nurse or doctor to call me back (I hate that). So i waited about half an hour for the call back and the results are in Staphylococcus and Pseudomonas non-mucoid. I was told that sometimes it just stays and colonizes in the lungs so it may not ever be fully cleared from her system. So what next... I just wait and see if her doctor wants to adjust her meds.

I was told that sometimes aggressive chest therapy helps clear the infection. Breezy is already on the vest and we also do manual CPT. But we do still have problems getting her to spit it out. If anyone has more advice on how to get the mucus out of a 4 year old I would love to hear it. I will try almost anything :)

CF Clinic

2009-01-24T13:03:00.004-05:00

Breezy had her CF Clinic this week and going in to Nemours I thought this one would be a cake walk. Breezy has been feeling quite well this last month. But CF is a crazy thing and I'm finding out that you never get exactly what you expect out of it. I would not by any means call this a bad appointment because we came home so that tells you a lot.

We do however have a few things to monitor for the next couple of weeks.Two days before her clinic the dreaded oil in her stool came back.This is a concern because Breezy's CF is accompanied by terrable GI problems. Breezy did not lose any weight she is still 34lbs for this clinic but she did grow in height to 3ft 4.47 inches which had dropped her down from the 50% to the 25%. So now she is on creon 10 which has doubled her dose of enzymes hopefully that will fix the problem.

About a month ago Breezy completed a sleep study that came back with no airway blockage. However Dr.Lang wants to repeat the sleep study if her snoring continues. I'm almost positive we will be repeating the study because she has been snoring since the day she was born and she snores like a grown man...so I can't imagine her stopping now.

The Currents Meds Are:

Creon 10
Nasonex
albuterol
zithromax
pulmozyme
tobi
source cf vitamin

And of course continue her Vest

Her chest was clear so that was a plus. And I guess we will just wait and see about all of the other things going in in my little Breezy. The took a throat swab and we are awaiting results on that.

NYC Photos

2009-01-22T19:32:00.010-05:00

We took a weekend trip to New York City & Had a wonderful time. It was way to cold for this Florida family but me managed to bundle up enough to have fun.

Some of our trip Highlights:

Breezy's First Snow!!!
The Little Mermaid on Broadway
Rockefeller Center
Amazing Food
Fun Shopping
The Gazillion Bubble Show