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Make a difference, one letter at a time.

People with CF should never have to decide between buying groceries or medicine, or between paying the electricity bill and a visit to their care center. Without vital state programs that help them afford their care, many will be forced to make these impossible choices.

Take a moment to help all people with CF in your state get the care they need.

Your state lawmakers may soon consider proposals to cut or even eliminate children’s health care protections, Medicaid and other state programs that help many people with CF pay for their medications and therapies, visit CF care centers, afford hospital care and more.

Without adequate funding, these programs may be forced to turn away the people who need them most. It is up to us to explain to lawmakers how essential the care these programs provide is to people with CF.

Thank you for all you do! Together, we will keep adding tomorrows for Sutton and people with CF.

Home Sweet Home

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After 5 days at Egleston, we finally made it home tonight! Can you tell who is happy to leave the hospital?

Sutton is now just on an oral antibiotic (in addition to her normal daily regimen) and we will keep a close eye to make sure she isn’t having any more coughing fits. As nice as the folks at Egleston were, let’s hope we don’t see them again for a long time.

Thanks again to our awesome family, friends, small groups, prayer warriors, doctors, nurses, respiratory therapists, and more who made our first trip to ‘5 West’ one that we will not forget.
In addition to the general excitement of coming home, look what was delivered to our house today. Former NFL quarterback, Boomer Esiason, is a visible spokesperson for CF (his son has CF) and his Foundation supports efforts around CF research to help find a cure. My friend Jon Goebel got this signed football from Boomer to Sutton. We will look at this as our daily reminder to ‘Fight Everyday’!

Hiatt was so happy to see Sutton and gave her a big kiss when we got home.
As you can imagine, happy hour at the Burnett household looked something like this today:

If you’re happy and you know it, smile!

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Yesterday was a little busy, not so much with Sutton, but with us. We attended Charlie’s funeral last night. It was very nice and he was such an accomplished man. I learned so much more about him that I never knew. Thanks so much for all your kind notes to Brittany.

Sutton is doing much better. She has no strings(or wires) attached. She tolerated one more round of intramuscular antibiotics and now she is moving towards an oral antibiotic. Woohoo! She always has a smile on her face and is not really fussy other than when they stick things inside her nose to clear her out, but snaps back to smiling right after its all over.

After the funeral last night, we picked up Hiatt and he was so concerned with where Sutton was so we snuck him into the hospital for a quick five minute visit. He gave her a kiss and told her he loved her and missed her and then we were out the door and he talked about her all the way home. Such an amazing big brother.

Linda Murphy stopped by from the Ga CFF chapter to check on us. We are once again amazed by the people who have become a part of our lives. The foundation has been such a great addition to our family. Speaking of family, our family has been incredible. We have more offers to help than we can even imagine. They are all truly amazing. We cant do this without them. TJ has stopped by every day that she has been working here at the hospital and always brings a hug and a smile to our room. Thanks so much to all our friends and family for everything, whether it is your kind words, your help, or even just your offer to help, it is all appreciated.

Last thing is a big thanks to the staff here at Egleston. They have been amazing and so kind. They work so hard for all the patients here and even accommodate the parents the best they can. They even gave us a room with our own infant jacuzzi tub! (See photo). We are still trying to figure out where the sink is though…

Much love to all our family and friends. Hopefully we will head home soon. And again, THANK YOU!

Theres no place like home…

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Theres nomplace like home, but if you cant be at home, 5 West isnt too bad. They are such a great crew here. Sutton is so sweet and everybody loves peering in the window at her.

Things have been smooth overall, but we have had a few complications. Poor Sutton has been a pin cushion. They have had a rough time getting the IV to stay put. She has one in place now, but its fragile at best so her arm is immobilized. The PICC nurse came by and didnt have much luck looking for a vein to run a line so we are stuck with the IV for now. The doctor switched her to an intramuscular antibiotic for now to avoid the IV if we dont need to use it. Two shots every 24 hours for now. Sutton does not enjoy that one bit. A little hug and a kiss and she is back at her best.

Looks like we are here for two more days at least. We are waiting on culture results to determine what bacteria is growing and if anything needs a different antibiotic than what she is on. From there, we have no clue as to how long we might be here. At least they are very kind to us and Aunt Tj works here so we have that perk if we need anything. She has been so kind to us. In fact our whole family has been very helpful. Sutton got a smell of Ferrells which helped her smile from mamaw.

On a side note, Brittany grandfather passed this morning, so keep the Shaw family in your thoughts and prayers as they deal with this difficult time.

Welcome to 5 West

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Welcome to 5 west, not the most comforting words a CF parent can hear, but definitley reassuring. 5 West is the hospital floor at Egleston Childrens Hospital where CF kids hang out when they arent feeling so well. We made our debut on the floor last night.

Yesterday was a normal day of last minute preparation for Brittany to go back to work. We were at the ped office to pick up forms for daycare and all seemed well. After se left, Sutton began one of her coughing fits and turned blue. Not a comforting sight for parents. That afternoon we were back at the ped office where she had another episode and the pediatrician sent us on the the ER to be checked out. Not too long after, we were admitted and still here today. Everything is going well. A few antibiotics and a few more tests to see what is going on and maybe we can be home in time for dinner?! For now, we feel like we are in the right place and in good care. Sutton is such a good sport. After numerous sticks for IV and lots of other pokes, she still has that angelic smile on her face.

Look for the homecoming message soon.

Time flies when you’re having fun…

20121230-214938.jpgIts been a while since our last post. Time sure does fly when you are having fun. A lot has happened in the past two months, but all seems well.

Thanksgiving welcomed the new dynamic of germ protection to the family. With with 24 possible attendees in Brittany’s family and it being the start of colder weather, somebody is bound the have a cold. Brittany’s Uncle Jim wasn’t feeling well so he stayed clear of the gathering. It is difficult to express our concern for Sutton’s health and well being, but what a blessing to have family who understand the issue and volunteer to sit out. Thanksgiving was only the start as we continued to have somebody with a cold all the way through both sides of the family and we missed seeing a few people and even postponed a few gatherings as a result. It only makes sense as nobody needs to spread germs, CF or not. I think we are all more aware of our health in general these days.

Speaking of health, the flu shot campaign for our families was a huge success! Nobody fought back and we are currently at 100% for the family flu shots. Most people went and got theirs as soon as we mentioned it. Even Grannie eventually got hers before she came for Christmas.

Sutton is growing! She is progressing right where she needs to be. At her 2 month checkup at the CF clinic, he was in the 50th percentile for height and weight. She eats well, sleeps well and as you can imagine, well, I’ll just let you imagine! We have had many solid nights of sleep. I thought she was sleeping until 8 am every day, but then Brittany mentioned being up since 5:30 one day and then I realized that I was the one sleeping through the night. She is still making it almost the whole night. Hooray for sleep.

Christmas was a huge success. Sutton got everything she wanted (socks and new clothes) and a few things she did not–she has developed a runny nose that has her coughing quite a bit. We made a trip to the pediatrician the morning after Christmas and all was clear with her lungs so now we are just trying to keep her nose clear. Hopefully all will be better soon.

We are excited about the new opportnities for 2013. We have decided to focus on two major CF fundraisers, The Great Strides Walk on May 18 and the Cycle for Life in the fall. Our families have all expressed interest in other fundraising ideas including everything from bake sales to car races to raise money for a cure. We are so fortunate to have such a loving and supportive family.

We wrapped up the 2012 Cycle for Life with over $8,000 in support of Team Sutton Grace. With only such a short time to raise money and only two riders, we felt very humbled by the outpouring of support. We are already planning for next year and expect more riders on our team and for overall support to grow as well. We will be training for the full 65 mile ride this coming year. Thanks to all who supported us. We are so very grateful!

We will keep posting as we progress through the new year. We are hoping for a year of new opportunity. Happy 2013!

Cycling, sniffles, and signatures

Cycling, sniffles, and signatures

Whew!–we’ve had alot happening over the past 2 weeks! Thank you again for all of your support as we continue to navigate this journey together.
On Saturday, November 3rd, Jeff and my cousin, JV Gortney, participated in the Aptalis CF Cycle for Life. The event was a 30 mile bike ride through the Serenbe community (just south of Atlanta) and was a HUGE success thanks to your contributions and support. To date, we’ve raised nearly $8,000 for Team Sutton Grace and were one of the top fundraising teams for the entire event! Jeff was the top overall fundraiser for the entire event and JV was one of the top fundraisers too! All of this happened in just 9 days–wow! We think that next year, their team name might just be the Silent Ninjas (watch out they come out of nowhere!).
I brought Sutton to the event and we bundled up while Jeff and JV rode for a couple hours. We met some other CF families and Sutton’s doctor even rode that morning! A great day overall and one that keeps us even more encouraged to find a cure.
We continue to be overwhelmed and humbled with all of your support.
If you are still interested in donating, you have about 2 weeks left to contribute–simply click on the link below and help us find a cure for CF!

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

The following weekend, both Hiatt and Sutton managed to get their first colds of the season (and Sutton’s first cold ever). Little Sutton sounded like Darth Vader for a couple days but thankfully didn’t ever have a fever. It was my first call to the CF Clinic after hours but they assured me that we were doing all of the right things to keep her on the mend. Thank goodness for saline and those little bulby nose suckers! Both kids are feeling better and we are working to get all immune systems strong for Thanksgiving which will be lots of time with our awesome families!

We went in for Sutton’s 4 week checkup on Monday Nov 12th and she is now at 8lbs 6oz so she’s gained an entire pound since she entered this world–yay!  The enzymes we feed her before every meal seems to be working and helping her absorb the nutrients her body needs to get big and strong. She’s still on the small side for her age, but if she’s anything like her big brother Hiatt, she will catch up in no time!

Lastly, we need your signatures! We are just weeks away from devastating budget cuts that will jeopardize critical research and the swift approval of new medicines for people with CF.These cuts will damage many programs that improve the lives of people with cystic fibrosis, from studies that help improve nutrition for babies with CF to the review process that ensures new drugs are safe and effective. We can’t let them slow our march toward a cure.The clock is ticking: the window of opportunity for our elected officials to stop these cuts is rapidly closing. Congress needs to hear from you. Our elected officials can and should fix our deficit while protecting these important investments that save lives.

Please click here to let Congress know that we cant stop the progress towards a cure!
http://nu.salsalabs.com/o/50674/p/dia/action3/common/public/?action_KEY=7983

Until next time—

Angel

I’ve got an angel
She doesn’t wear any wings
She wears a heart that could melt my own
She wears a smile that could make me want to sing
She gives me presents
With her presence alone
She gives me everything I could wish for
She gives me kisses on the lips just for coming home
She can make angels
I’ve seen it with my own eyes
You got to be careful when you you’ve got good love
‘Cause them angels will just keep on multiplying

-Jack Johnson

CF Clinic Visit

We had another CF Clinic visit today at CHOA. It was a positive visit with good updates on weight , growth and overall health. Sutton is back up to 7lbs 5oz, almost birth weight. We will get another weight update on Friday at the Ped office.

We started enzymes, salt and vitamins today. Its a challenge figuring out to get a newborn to take a pill, but the drug manufacturer has it all figured out and they even gave us a starter kit. We have to break open the pill, place it on a spoon with a very small amount of applesauce and then somehow get sutton to swallow it. Seems simple, but newborns have the reflex to push stuff out of their mouth with their tongue so it takes a few minutes to accomplish. Se is doing great at it and each time gets easier. Salt is as simple as adding it to her bottle throughout the day. Se takes 1/8 tsp all day, so not too much. Last is the vitamins. Much like over the counter polyvisol but much higher levels of fat soluble vitamins since she has a hard time absorbing them. We hope all of the new additions will help her weight take off and increase much faster.

Sutton also is being welcomed to her first medical study for CF. The study is used to monitor nutritional intake vs growth in infants with CF. We have a few extra notes to take before her CF clinic visits and they will monitor her growth closely, but thats about it for the study. We are happy to support the study to help with CF research and maybe even help future CF patients.

Meeting with CFF

Today we received a message from the Executive Director of the CFF Georgia Chapter that he wanted to meet us. We decided it was a great opportunity to see how we could get involved. When we arrived at the office, we were amazed once again by the warm welcome of CF supporters. All of the staff met us in the lobby with excitement that we were there. We felt like rock stars, but the greatest part about it is that we are not rock stars. All of the people involved with CF both medically or in support are there because they are deeply passionate about what they do. We will do everything we can to support the CF Foundation.

http://www.cff.org