65 Rosebuds

We have made it through another amazingly short hospital visit. Sutton was released to come home for her protection from other illnesses lurking at the hospital. She still has some junk inside her, but we are able to manage the treatments at home for now. There is some good and bad to it all though. Sutton and Hiatt have to be separated for a few days and with a house built for a mouse, we had the challenge of sending Hiatt off to “Pop’s House” for a few days. Good news is that I will get to spend some great one on one time with Sutton as we prepare for her One Year Birthday Party this weekend. All in all she seems to be doing better every day and we will again stop at nothing to help her get to her best.

This year for our Cycle for Life fundraising, we are focusing on two people, as well as keeping up the pace for all of those with CF. As we fight each day to help cure CF for Sutton, we also fight to end the disease for all CFers. (Warning:Kleenex Alert)

Earlier this year, Brittany and I were led to know of a girl fighting CF to live… Here is her story:

“My name is Rosie, and I am 24-years-old. Raised in a very large and loving family, I was fortunate to always be surrounded by warmth and laughter. After four years of university, I graduated with an Undergraduate degree in Education. My dream was always to teach preschool. For the last three years, however, my career has been postponed. And perhaps it is gone forever. The reason being, I also face health challenges: I was born with a genetic lung disease, Cystic Fibrosis (CF). And after graduating, my lungs began to decline…

…I am now on the list for a double-lung transplant. And every day is beautiful.

I have known for over a year that this was my fate. And I have had many dark moments because of it. But through the darkness, one thing has always helped me to rise above.

Love.

And now, though my health is just as unstable and my fate more uncertain every day, my spirit and heart is stronger than ever. I feel love in the faces of my family, friends, and strangers. I feel love in the wind and the trees and the setting sun. I feel love in the grass beneath my feet and the sound of my nephews’ laughs and the touch of my loved one’s hand. I feel love in everything. Especially the brief moments that I share with new beautiful strangers. Every hello, every smile, could change the course of someone’s day. And I thrive on those everyday beauties.” -Rosie Alma

Brittany and I took a chance to connect with her and discussed meeting Rosie and visiting her through her recovery. We got busy, things got hectic and we just never had time. Time is an important lesson that Rosie taught us as well as love. We learned later that Rosie had her new lungs but they didn’t agree with her body. Rosie’s body was defeated by CF, but her heart and soul defeated the disease with compassion. Rosie passed on June 17, 2013, almost a week before her 26th birthday.

You are probably wondering why I am sharing such a sad story, but that’s not the case at all. Rosie, though we never met her, was a beautiful, positive, caring, loving and giving individual. For her 26th birthday, she asked for friends to give 26 Acts of Kindness. She wanted to spread love through the world. Rosie said “All I want for my birthday, and every day, is to spread love. Please help me in doing just that. I could not ask for anything more”. Rosie’s wish was held true and the random acts go above and beyond 700. She shared her gifts with everybody and while her reports of acts stopped at 718 on her blog, I see from the countless notes on facebook from friends and strangers alike, that her acts of kindness will go on forever.

This year we are riding in Honor of Sutton, but also in Memory of Rosie Alma. We are asking that each of you that give to our ride in Honor of Sutton, Ask one friend, family member, co-worker or even stranger to give another donation in memory of Rosie. We also ask that each of you give one random act of kindness in memory of Rosie. We can end this disease, we have to end it. We are reminded of its harshness every day, all day as we take care of Sutton. It is our wish for Sutton to tell her grandkids about the horrible disease that used to exist, but that we fought it down to nothing, and that if we put our minds and energy into something, we can do our best to make it happen.

“Something that I personally find helps to increase my feeling of love: rather than focusing on how much love I am receiving (whether from family, friends, a significant other, or the universe in general), I try to focus on the love I can give. To those I hold close, to strangers I meet, to the nature and existence and whole world around me. I try to treat all of existence with love and compassion. And I find, ultimately, that projecting love outwardly returns an unimaginable wealth of love to its original source: i.e. you or I.”- Rosie Alma

Help us show Rosie’s love for this years Cycle for Life. We are on the edge of something that can cure CF for everybody. Through all of the struggles of our country, we are afraid of the medical struggles that might lie ahead, but we can’t wait on others. We have to move ahead. We will fight to add every tomorrow we can for Sutton and continue to pass of Rosie’s love for all.

Will you help us?

http://www.cff.org/LWC/jeffreyburnett

You can read more about Rosie at the following links:
http://www.positivelypositive.com/2013/06/18/stop-making-excuses-other-lessons-from-rose-rip-rose-alma/
https://www.facebook.com/pages/Rose-Alma/270064006438737
http://weareone-wearelove.blogspot.com/

Time for another update!

First off, I know many of you are wondering about Sutton. We have had a rough week so far, but we are on the right track. Last week was the beginning of a cough that quickly progressed over the weekend into something a little more substantial. An official kickoff to cold season has begun with her first antibiotic and as the week progressed, so did her effort to breathe. After slowly increasing treatments and medicine, we finally reached a point where we felt it was necessary to bring her over to the hospital. After we finally got admitted to a room(the ER was a madhouse!), we got settled in, Sutton had a few treatments and then it was bed time. Sutton was all hyped up albuterol so she just wanted to play. I finally got her settled into bed at 4:30AM and she woke up at 8AM with a smile ready to attack the day, until about 9:30 when she was exhausted and ready to sleep.

A couple of weeks ago, Brittany and I were guests on a radio show along with Amanda Gilbert from the Ga CFF office. The show was titled “Dr. Fitness and the Fat Guy”. Since 2005 The Dr. Fitness and the Fat Guy radio show has been educating, inspiring and motivating listeners all over the world in their quest to lose weight and lead a more active healthier life. They constantly have guests on their show focusing on different active lifestyles. It was a great opportunity to share a little of our story and raise awareness for CF. We focused on our upcoming bike ride on Nov 9th. Take a moment to hear Brittany’s great radio voice and my average radio voice by clicking on the link below.

Cycle for Life – Team Sutton Grace Radio Interview

A very important part of our lives is raising money for CFF support. I’ve said it before, but this is our life line to curing CF for Sutton. We can’t change the world on our own, but if we pull ourselves together, we can make one heck of a dent! We are almost in full stride with raising support for the CF Cycle for Life and this is where we need you to help us. Every little donation counts and gets us closer to a cure. Look for our link on our home page if you can spare a few dollars. We can’t thank you enough.

As our weeks progress and we get closer to the upcoming CF Cycle for Life, we are focusing on different achievements and stories through our posts. Look for an email update each week to follow along.

It’s time for our next big fundraiser! We wish would could win the $400m lottery that is taking place right not. That would solve a lot of problems. We would put as much money as possible into finding that miracle cure for our sweet Sutton! But while we wait on that to happen, we need help from our friends and family to keep efforts moving forward for a cure.

We are gearing up for the 2013 CF Cycle for Life on November 9 at Serenbe, GA. We need help in many ways to be successful. We are growing our team and raising money for a cure. Brittany and I have been involved with the Cycle for Life Board trying to get all of the details ironed out. The board is busy asking for corporate sponsorships, so if you know anybody willing to give money towards a great cause in return for some publicity, let us know.

First thing is we need donations to help support the next phases of a drug that could cure CF for Sutton. We already have one breakthrough drug that presents a cure for about 4% of the CF population, but Sutton isn’t in that group. In fact, she isn’t in the next round of the drug that currently in testing. We need to keep momentum going so that we can continue to push development of another round following that has potential to be Sutton’s miracle drug. This would mean, no more vest, large amounts of pills, special diet…It will give Sutton a more normal life much like other kids her age. While her friends are going to sleepovers, camp, or weekend retreats, it won’t be that easy. She has to have all of the equipment which is much larger than a normal carry-on bag. If we can get this drug where it needs to be in a few years, she wont have to worry about that at all.

Now I know some of you aren’t in a position to donate funds, but there are several other ways to help. We have Team Sutton Grace for those who have time to spare and help us raise money. With the upcoming bike ride, we are always looking to add members to our team. There is no need to be an expert bike rider, we have a place for anybody that can pedal on two wheels for a short 15 miles. If bike riding isn’t your thing or you think you aren’t up for the task, you can sign up to be a virtual rider and help by raising funds through Team Sutton Grace towards the foundation. Last, we always need help at these events and if you can spare a few hours on a Saturday morning, we can use you!

I bet you all are wondering how Sutton is doing. This is the most important part. Sutton recently went in for her latest CF Clinic Visit and got an overall good report. Prior to her visit, she was sent in for an x-ray of her chest to make sure everything looked fine, but it wasn’t perfect. After the doctors looked over her chest x-ray, there was a good amount of cloudiness in one side indicating some build up. This is what leads to lung problems down the road. The good news is that we were able to see it and are now adding another treatment, twice a day to help move some of that stuff out.

If you can help us out in any way, please contact us. We have a link in the side bar to donate to our ride or to join us. We will even throw in a free Team Sutton Grace T-shirt for anybody that joins our ride team! We can’t do this without our great friends and family and as always, Thank you for giving our baby girl more tomorrows.

It would only be fair for me to throw in an update picture – We went to pick Apples up in North Georgia this past weekend. While we were there, I was having a muscudine slushie and holding Sutton. She decided that she was interested in it so I put the straw in her mouth to see what she would do. She instantly started drinking my slushie through the straw and it soon became hers. Here is a snapshot of the fun!

That “75” has a nice ring to it doesn’t it?  Especially in years as it relates to a CFer. Sutton is 9 months old, which equates to 3/4 or 0.75 years, but she will definitely keep going upwards and beyond 75 years old.  After all of the hardships we encountered at the first of 2013, we sure have come a long way.  We haven’t had any reason for the hospital and our visits to the CF clinic are becoming less frequent.  We have so much to be thankful for and her progress had been such a big part of that.  It seems too hard to believe that it wasn’t that long ago that we were regulars up on 5 West.  We know we could see 5 West again someday, but we are feeling good about Sutton’s health for now.

Since our news story aired in May, a few things have happened.

Sutton had her July CF clinic visit, two months following the previous visit!  We made it two months between visits without any concerns and are still going strong.  The visit was a very good visit.  We met with the doctors, nutritionist, nurses, and respiratory therapist(“Uncle Robert”) and everybody had good things to report.  She is breathing well, maintaining a healthy weight and no signs of any breathing distress.  The visit was not only good for us but for the clinic as well in their new location.  The clinic is much nicer, still close to home and the best part is that there is plenty of parking.

Sutton’s next round of visits were to Dr Wise, our pediatrician.  The visit went very well with all good things to report.  Dr Wise was happy with Sutton’s growth of 75th percentile in weight and 95th percentile in head circumference.  As I mentioned before in an earlier post, we are closely watching her growth through the first year.  Significant growth is an indicator of healthy lung function later in life for a CF baby.

We are starting to see some other growth as Sutton is learning and showing us new things every day.  So far she is waving and saying “Hi” and “Bye-Bye”(in a better than baby speak), pulling up and standing on her own unsupported as well as crawling just to name a few… It won’t be long before she is ready to read.

Team Sutton Grace is in full preparation mode for the CF Cycle for Life on November 9.  As we meet with the other board members, it’s always encouraging to know that we are all fighting together.  It is easy for a new parent of a CF child to be energetic about fundraising, awareness and curing the diseases.  We all have a motivation to keep us going.  It is when we finally get a chance to take a breath and realize what it is that is amazing about the people fighting along side us.  They didn’t start this fight when we did.  They were already in the fight and some of them for a long time.  It is a great feeling to know that we just help fuel the momentum and not that we are picking up slack or reigniting the effort.  We are a part of something that we know will find a cure for CF and these type of people won’t stop there.  We will fight for something else when CF stands for cure found.

It is truly amazing to see how far we have come since we began this journey.  We know that there will be many challenges along the way, but we embrace every minute of being a part of Sutton’s life as we move along.  She has taught us so much and continues to teach us and others things like patience, love and most of all the true meaning of Grace.  We are looking forward to the years ahead.

Ever wonder how stars are born? They are either children of a star or get a lucky break and some producer puts them in stardom. The other type of star is born in way as mysterious as they are magnificent shining in the sky at night. Im sure Stephen Hawking has an explanation for that.

There is yet another star. It is in some ways a combination of both stars. They share similar characteristics. One that people follow for some reason but they also shine out to everybody. Amazing and wonderful with a light that shines to capture our attention.

Sutton is the combination star. She has spread a light of joy to so many people and even has a fan club with over 2,000 followers of this blog and growing.

Her contagious spirit has touched so many people. We built a team of over 70 people for this years Great Strides walk, while raising over $22,000. It was Sutton who brought this team together. Many times I wonder how some little girl so cute can have CF, but then again maybe its the fact that she has CF that she is so cute to make life easier.

Her famous debut was aired on Fox 5 here in Atlanta on May 20, 2013. She was now sharing her smile with so many strangers. The Fox team did an amazing job portraying her life and happiness while stressing the struggles she lives with on a daily basis. They helped spread her light to so manh more people.

We have received several emails from strangers that were touched by her story. We added a bunch of new followers to the blog and feel as if we have accomplised a little more by raising more awareness to CF and the hope of a cure in the near future. We have met other CFers, parents, relatives and friends. Her story even reached Elena’s aunt in Chatanooga where she was able to read our post about her!

Want to watch the news story? Click below to read and see Sutton’s claim to fame.

http://www.myfoxatlanta.com/story/22300712/blog-shares-atlanta-girls-fight-against-cystic-fibrosis

You might think of the word overwhelmed as a word that describes somebody who is in too deep, trying to get it together, might just have too many things on their plate. We can’t say that I share that type of overwhelmed, but I can say that I share it in the sense that we are having a hard time with our emotions as we feel the great sense of generosity among our family and friends, as well as many people whom we just met or have never met before. It is truly amazing how people feel attached to something and begin to open their hearts and wallets to support something that they have never had any connection to before.

As we close on our fundraising for the Great Strides Walk at Georgia Tech last Saturday, we can’t help but feel overwhelmed as we cross over the $22,000 mark for fundraising, and that is only Team Sutton Grace. We have about 65 people planning who attended the walk and it was a huge success.  There were over 2,000 people at the walk bringing in over $1.3 million.  That is A LOT of tomorrows.  We are humbled and honored to have so many generous, caring and dedicated friends and family.  We also got to see several familiar faces; CF doctors, nurses, nutritionists and her crew from 5 West was there with a team.  What a joy for us all to meet up for something so positive out of the hospital environment.  It is also good to see that the people caring for Sutton and supporting us are just as involved as we are at finding a cure.

We recently had our checkup at the CF Clinic on May 9.  We couldn’t ask for a better report. Sutton is gaining weight at a steady rate, maintaining at or above 75th percentile with high hopes of a successful lung function later in life.  She sounded almost completely clear and as always, had a big smile on her face.  We were given the go ahead to, again, skip a month and revisit in 2 months for her next follow up.  The doctors feel confident in her current health and we are back to our “normal” routine.

Guess who is going to be a star? Sutton has her debut on Fox 5 News, May 20, 2013 at 5pm.  The news team came to the house to film a story around Sutton.  It was a great experience with both of the reporters who came to the house.  They were not only very professional, but they were very helpful while they were here working with Sutton.  We had two great visits from the team and were able to reveal some of Sutton’s story to be shared.  Be sure to keep a look out for the story.  If you miss it, we will be sure to post a link and a copy of the clip online.

At least she is keeping up with her homework.

We got a chance to break free from the hospital and were sent home! I know many of you are thinking, what happened to the long extended stay? The good news is that after a few days, we were able to get a few results back and found out that Sutton has Influenza B. That changed a lot of things since they weren’t going to do the Bronchoscope with all of the inflammation in her lungs. The other factor was that while she does have a bacterial infection, they were no successful at getting the picc line after a long try in both arms and we were back to the "no tubes attached" approach at dealing with her illness. We discussed with the doctors that there was no real need to be at the hospital if we were able to administer all of her treatment at home. They also relayed that they were comfortable and confident in us to stay diligent in her treatment to get her better. We will get some good bonding time together with the increased treatments.

Let me give you a snapshot of our day….

Up in the morning with SourceCF multivitamin to replace un-absorbed fat soluble vitamins, Poly-Vi-Sol to increase vitamin D intake, Tamiflu to treat the flu, Omnicef to treat the bacterial infection and we haven’t even had a meal yet. Once all of that is down, it is on to Creon, an enzyme to help absorb fats, Prevacid to help absorb Creon, Formula mixed with rice cereal and salt to replace the loss of salt from sweating. Once that is finshed and we take a moment to digest, dad gets a cup of coffee and we are on to the vest therapy for 30 minutes and possibly Albuterol if needed. About an hour and a half and we just got the day started.

After nap time, its time for another meal! The best part about the mid day meals is that all we have to do is the Creon, Formula, rice cereal and salt. We then go through another round of waiting, therapy and possibly another nap. (Rinse and Repeat until dinner)

Then comes dinner. Another round of Prevacid and Tamiful, Creon, Formula, rice cereal and salt. After our break, another round of therapy, but this time we are going to add in Pulmozyme, an inhaled medicine to help break down mucus in her lungs.

If I lost you along the way, that’s one antibiotic, two vitamins, one acid reducer, one antiviral, two nebulized meds, specially mixed food, salt, and 20 pills of digestive enzyme. Did I mention that the Creon pills have to be broken open and placed in apple sauce on a spoon. Sutton is a pro at eating food from spoon. After all she has been doing it since her second week of life. The best part about it all is that our brain function is getting sharper each day as we remember and coordinate everything. Let’s not forget about diabetic, insulin dependent dachshund…don’t worry, there isn’t a blog for that.

There are many times that we all wish we could snap our fingers and make something happen. I know parents wish this more than others. We have many times mentioned that it would be nice to "take a pill and fix everything" We wish for that ONE pill that could take the place of all of the craziness that is our normal. It would give us, and eventually Sutton, so much of our time back. We enjoy the special time we spend with her, but we would much rather spend that time doing something much more fun. We are getting close to that pill, so close we don’t even have to imagine it.

Following the introduction of Kalydeco, the research has followed to expand that dream to so many other Cf patients. They are close enough that another large percentage of the CF population is in the testing phase of their cure. Sutton isn’t far behind that group and they are in earlier phases of testing for her little pill. It all takes money and we would give everything we have to get there. This isn’t a sob story to try to get people to give money, its a plea, a continuing plea from a parent, father, mother, brother, grandparent….the list keeps going, to help us fix this. We all want to fix things for our kids, and we are so close, we have a fighting chance. I’m not asking anybody to empty their pockets, but rather help us get those small donations from our friends, neighbors, maybe even mere strangers. Stand beside us as we are part of something huge. I believe that our network of friends and family have the capability to be huge in this fight. We might not ask for this stuff to be placed in our lives, but maybe we were all placed in this for others lives. We can bring a momentum to this cure like they have never seen. I have been told that we are a passionate family, dedicated and determined. I tell people that they haven’t met the whole family. We are Team Sutton Grace because of all of you. From the deepest depths of our hearts…Thank You.

We somehow managed to escape the hospital for a night of fun. The Cystic Fibrosis Wine and Roses Gala is a major fundraiser for the Georgia CFF Chapter. We attended the Gala with around 300 others, dedicated to raising money to end CF. There were so many great people there representing the Big CF Family.

One particular guest was a 9 year old girl named Elena. The thing about Elena is no so much that she is just a cute little girl, and she is, but that she is dedicated to the fight for CF. She is strong willed, smart and is living a life with Cystic Fibrosis. She has a true love for life and a passion for winning the fight against her disease.

The night started with a champagne reception and lots of silent auction items to bid on. Then dinner started and was amazing. After a little live auction time, it was time for Elena to speak. Her grandfather introduced her, but there is no way to set the stage for such an amazing little girl to speak her heart about CF. It wasn’t the way she told some of her story and talked about the things she likes to do, it was the bravery, courage and determination that she showed when she spoke that was the true inspiration. She is fighting the good fight. I know that her parents must be proud. In fact, I know that everybody there that night was proud of Elena for reminding us that there is hope on the horizon and that we are closer than ever before to making this dream a reality for Elena, Sutton and every other CF’n person out there!

If you want to read more about Elena’s story, visit her blog.
http://www.elenacfupdate.blogspot.com/

If you want to donate to Sutton and CFF for the Great Strides Walk, click the link below.
http://www.cff.org/Great_Strides/BrittanyBurnett

Stay tuned for another post shortly with an important update about Sutton….