Happy St. Patrick's Day!

There's some simple things in life, things that make you smile when you have the best of times or the worst of days.  To me that is the sillies above.  Keeping it short and sweet today...enjoy your day, your year, your life:

May you live a long life
Full of gladness and health,
With a pocket full of gold
As the least of your wealth.
May the dreams you hold dearest,
Be those which come true,
The kindness you spread,
Keep returning to you.

And a cool little reminder...

He who loses money, loses much;
He who loses a friend, loses more;
He who loses faith, loses all.

To donate to our Great Strides fundraiser, visit:  http://www.cff.org/Great_Strides/JimandErinBurns


2012 Fundraising Campaign Begins

Everyone has a cause, a person in need, a family, a church, a school.  This is our cause.  We are raising money because we are so prayerful that our cure will come soon.  We refuse to let Cystic Fibrosis define Dean and our family, and although we always have it on our mind and we continue to raise money for that cure, we will never lose site of just how precious of a gift we have in Dean as a person, as our little man, as our son.  Check out this video to see just why we want to share him and our hopes with you:  Dean's video.

 

For the second year, we will be participating in the Cystic Fibrosis Great Strides fundraiser and Walk on May 19, 2012 in Orland Park, Illinois.  This is an annual fundraiser for the Cystic Fibrosis Foundation and we can really use your help...

• Help us fundraise by signing up via our Great Strides site (it's super easy and would expand our reach beyond our wildest dreams)
• Make a monetary donation (if you're going to fundraise for us, make your personal donation on your page)!
• Bring Eat. Pray. Dean to a walk in your area (we're going National!!!  Eat. Pray. Dean will debut in Maryland this year - we'd love to be where you are too!)
• Finally, check out our personal website:  we have raised some money already this year, have events going on now, more events planned this year and have a blog to keep you informed throughout the year of Dean's health.

We are so amazingly thankful for each and every bit of help that we receive.  Thank you for sticking with us, for caring, for truly making a difference in the lives of so many and one in particular that is so undeniably courageous in every possible way.  We will leave you with this ending to our prayers that we pray for our kids each evening...May you wake up tomorrow morning with a smile on your face and God's love flowing through you.

 

Thank you,

Jim & Erin

 

 

 

"God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.” ~Hebrews 6:10 (NIV)

65 Roses

I've always loved carnations.  I'm not sure why, maybe because they are more cost effective than other flowers, maybe because they don't have thorns, maybe just because they last longer or just maybe because everyone seemed to just get roses and I just didn't always want to be like everyone else.  I've always thought of flowers as happy things:  as gift of love, of happiness, of appreciation, of congratulations, something to get on Valentine's day.  But there are stories, legends, associations of flowers that don't always bring such a happy image to mind, such as one Christian legend of carnations appearing on earth from Mary’s tear at Jesus’s carrying of the cross or a Korean legend about placing flowers on a young girl to determine when her hardship in life will begin.  The last story I heard about flowers made me tear up, so I'll share, it's called 65 Roses. 

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.  After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.  He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."  [sis'tik fībrō'sis...since then the term "65 Roses" has been used by children of all ages to describe their disease.]

I've been thinking about this a lot lately.  Dean has no idea what he has.  He does not know he has a disease, he does not know why he has to do his treatments first thing when he wakes up.  He has no clue about why those little red and blue capsules have to go down into his belly with his food.  He just does it.  He does it because we tell him to, we sit there with him and he has faith in us that we will do what is right for him.  Of course he doesn't consciously think of this complete trust - he just does.  There are so many times where I wish I could be just like him, just do, just trust, just have complete faith to know that it will all be all right.  I try so hard to trust completely but I think too much, I fail and I need concrete evidence sometimes.  I need to see it, smell it, hear it, feel it.  I have a faith in God that I feel could move mountains, but I so long to just see those mountains move.  Last week, praise God, one of those mountains moved and I was here to see it. 

On Jan 31, 2012, the FDA approved a drug that targets the cause of CF in patients with a certain mutation (G551D), and tries to fix what's going on at the cellular level; it will significantly improve the quality of life of 4% of the US CF population - that's about 1300 people that will benefit from over 10 tireless years of the Cystic Fibrosis Foundation parterning with the developer (Vertex) and providing significant scientific, clinical and financial support (approx $75 million).  I mention the money because I want you all to know that every dollar that you raise or help us raise goes towards funding research and development.  We are so happy for the kids and adults out there that will benefit now from this new drug (Kalydeco).  Cheers to them and their families; to all of the caregivers out there that will see improvements in their health, their loved ones health and the quality of life that they will see increase.  That mountain was moved. To read more about this drug, follow this link. 

This breakthrough motivates me to raise more money, to do what we can to make sure that the next phase of what is out there now will help Dean. In fact, word is that Dean will be able to benefit from Kalydeco along with another therapy that is in phase two of clinical trials.  Also, some major partnering with Pfizer and the CFF can't hurt in the hunt for a cure for CFers with the mutation that Dean has.  I know it can be done.  I have faith that it will be fixed but faith doesn't just mean sitting back.  It means praying and doing everything that I can.  Doing what we can now means one fundraiser at a time.  I really want this mountain to move so I pray and will continue to tirelessly raise not only our family but as much money as we can with the hopes that Dean won't even have to learn to say "65 Roses" to describe his disease.  I won't hide it from him, but I truly pray that soon, for us, the rose will go back to being just another flower associated with Valentine's Day.

keep up to date with dean:  http://www.eatpraydean.com/
sign up on our 2012 Great Strides team and help find a cure:  http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7708&idUser=460312

Dean at 22 months

so long...farewell 2011

2011 was a good year.  Uncle Stevie came to visit from California in February to kick off the year with some family bonding time.  Although, Owen took him as another wrestling challenge, Evie balanced out the madness by bonding with her godfather.

In March, we shared the story of how our baby Dean was diagnosed at birth with Cystic Fibrosis and how we as a family had spent the previous year understanding, accepting and making it a part of our lives.  We hoped by telling our friends and family that we could raise our goal of $3,000 to donate to the Cystic Fibrosis Foundation to fund vital research programs.  Amazingly, we raised $27,000.  Throughout our emails and subsequently our newly created blog, we've expressed our gratitude - however we're not sure if we expressed how completely that support helped us in feeling we have so many people lifting up our baby, lifting up our family and loving and supporting us.  That feeling doesn't have a price tag.  It's one that encompasses your whole body making you feel warm.  Dean turned one in March and continues to be an amazingly active little boy, currently cutting his molars, learning new words and just recently learned the stinkeye.

Dean's stinkeye

Evie turned 3 in May and her personality is just simply awesome.  Extremely independent, she is willful, precise and hilarious.  You can frequently hear her singing "I'm sexy and I know it" courtesy of dad's pop dance parties.  She's shyer than ever in her first preschool class but has made some new friends and continues making up friends and where they live (i.e., her friend Candy lives in Hawaii, Felly lives in Michigan, Stella in New York).  We're unsure if she needs more playdates or has the travel bug.  She takes gymnastics and just started karate with her big brother.  She'll do anything with dad and never wants to miss out on anything athletic.  My all time favorite quote from her this year came after she watched her favorite movie Elf about a go-zillion times.  She came running into the kitchen telling me "Mom, Mom, I think I broke the son of a nutcracker."  Here's a picture of her and the "Son of a Nutcracker"

We walked in our first Cystic Fibrosis Great Strides Fundraiser at the end of May; cold, rainy and surrounded by a group of the most amazing family and friends, team Eat. Pray. Dean. 

Cali turned 8 in July and got a room makeover from the O's - teal blue and scattered with Peace Signs.  She has grown up so much this year.  She is intent on pursuing being a singer/actress when she grows up and took part in a summer camp performing the Bear Went Over the Mountain as Mouse #2.  In January, she will have a role in the Children's Ensemble of the Sound of Music.  Cali continues to surprise us with her memory and is an avid reader.  She cannot wait to host another book club this winter, just got her first Nancy Drew series and loves to stay up late talking. 

Jim & I also celebrated 11 years of marriage this month - I love my best friend.  Enough said.

August threw some changes in our lives.   Dean's annual lung xray showed some mucus build-up in his left lung so we started a new series of treatments.  A nebulized medicine with the intent to thin any mucus in his lungs and The Vest to "hammer" the mucus out of his lungs.  He's awesome, takes it in stride and just gets that it's part of his daily routine now.  We also were fortunate enough to be able to help out with a neighborhood softball challenge that our subdivision organized.  Seeing our neighbors and then the greater community pull together to raise funds to help improve an aspect of a child life was humbling.  It's so easy to get caught up in the me, me, me and how I need to do this or that and you sometimes forget to think how good you have it, how awesome your life is and how helping others and giving back is what makes this world go round.

October is probably the only month that threw me for a fantastic loop.  I should have taken a picture but there was a crazy amount of antibiotics being administered among the normal meds around here.  50% of us on z-pacs at the same time and the introduction of Pseudomonas aeruginosa causing 2 more daily neb treatments for 28 days for Dean.  We got over it, the PA was cleared and I learned to NEVER again complain about the 30 minutes he does every day because it could always be worse.  I've learned that lesson a lot in life - there is always a situation that is worse off and one that is better but realistically, God only gives you what you can handle - you don't grow by dealing with the easy and normal; you grow with the challenges.  Granted, when all is well, it's awesome but challenging yourself, either intentionally or the challenges your given is another thing we've learned is important in growing up, growing strong and growing in our faith.

Another milestone, Jim celebrated the big 35 in October and the kids surprised him with 35 balloons stuffed in his car at the train station.


their proud selves after stuffing the car and writing on the windows!


Owen turned 6 this month too.  He's a sweetheart; forever concerned with others feelings and has a crazy head for numbers.  He's really into Wii, loves climbing trees, ranks as a camoflauge belt in karate, would do anything to be with his big sister and idolizes his cousin Danny.  He's got a sensitive streak that is frequently excited when dad teases him about his "girlfriends."  One of our favorite memories of this year for Owen is when a little girl came up to him and school and said "Owen, I like you and I want to marry you."  Owen proceed to say to her "You're too short (meaning too young)" and she replied with an "Owen, you are going to regret that!"  Already breaking hearts...

In November, Jim and I escaped with some of our best friends for 5 days of palm trees, sand and relaxation.  We had time to eat warm meals together, talk, swim, reunite.  How easy it is to neglect your spouse in the hectic day to day routine.  It was awesome getting to know each other again.  Of course, without the best Omma, Obba, Grandma, Grandpa and Gigi in the world we wouldn't have been able to do that so we are forever grateful to the way they came together and helped us enjoy our 11 year anniversay!  I know there are times where I take for granted what I have in our parents; it's something special and awesome when you have parents that want to spend time with your kids.  It's a breath of fresh air knowing you're not alone in loving your own kids with every ounce of your heart...we're blessed with our parents and as much as I do remember, there are many many times I don't remember to thank them for loving us and our gems.

We also kicked-off our 2012 fundraising this month...17 people joined us to brainstorm and help us figure out how in the world we're going to raise $28,000 this year - thanks a bunch to Kim for keeping us on track for it all.  In conjunction with that meeting, we launched our personal website where you can keep up to date with our efforts to raise money for a cure and our first CF Madness raffle to take place in March.

December marked a great month of celebration of the birth of Jesus, family gatherings and bonding with the kids and a surprise visit from Uncle Stevie.   Quality vs. quantity.  Even though you may not get the opportunity to see the people you love as much as you do, I've learned it's more important to make the moments you have count.  Taking the time to smile and really show someone you care means more than countless hours spent near each other.   That's one of the many things I admire about Jim, he ALWAYS says what he means, honestly and takes every opportunity to make a connection with someone.  It's not always easy to feel comfortable in every situation but it's the people in this world that count right?  Our pastor recently said you won't see a U-Haul following your hearse.  So true, so true...

Whenever I ask Jim how it's going, he says Fantastic, I'm living the dream baby.   I think he's right - sometimes I feel like I'm in a dream that is scary but we're blessed with an amazing amount of goodness our lives and I couldn't think of anywhere I'd rather be than right where I am.  In 2012, I thought about making resolutions, promises, another to do list.  I think I'll just make memories.  Wishing you all a year full of fantastic moments and blessed and healthy days.   To a fantastic 2012...

Some favorite verses from the year...

• Cast all your anxiety on him because he cares for you. [1 Peter 5:7]
• Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. [Ephesians 4:29]
• And do not forget to do good and to share with others, for with such sacrifices God is pleased.  [Hebrews 13:16]
• I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. [Philippians 4:11-13]

Subscibe to this blog via email:  http://feedburner.google.com/fb/a/mailverify?uri=ADifferentKindOfPerfect&loc=en_US

I may have Doritos on my face, but no PA in my lungs!



Pseudomonas aeruginosa



Back in October, we found out Dean had cultured Pseudomonas aeruginosa, a common bacteria found in water, soil, etc. Normally the bacteria doesn't bother anyone but for Dean with CF, his lungs form an ideal breeding ground for this bacteria that likes to grow in warm, moist environments.  This is dangerous because repeated lung infections from PA are the leading cause of decreasing lung function in people with CF. Most oral antibiotics cannot attack the bacteria so Dean's treatment consisted of 28 days of an inhaled antibiotic, Tobramycin (called TOBI) 2x a day.  The inhaled TOBI is concentrated in the airways and targets the area infected with the bacteria.  It made Dean tack on an additional 20 min inhaled/nebulized anitibiotic after his morning routine and then again in the evening.  I thought getting a 19 month old to sit somewhat still for 30 minutes was hard (his normal daily treatment time); 50 minutes seemed excruciating.  I stressed over it all...sometimes we only lasted 17 min, other times the full 20...once only 13 minutes (ugh)!  I felt sure that the few minutes we missed were going to cause us to not get rid of the bacteria.  I stressed about him having his binky in during the treatments but it's really the only way we can get him to stay there without flailing all around. 

This was our first experience with PA.  It broke my heart when I heard.  I had previously read that about 40% of CFers between 6 and 10 have had PA infections in their lungs.  How in the world could our 1 year old get it?  Was that so bad that it will damage his lungs? Will the TOBI work?  Sometimes I forget that the data for the little ones just isn't there.  Newborn screening for CF is relatively new in many of the states (within the last 6 years for many of the 50 states) so the data just doesn't exist for effectiveness for some of the treatments that we will be faced with.  However, for the strain of PA that Dean had (non-mucoid), this treatment was proven to work in kids 6 and above.  We were told it could sometimes take a 2nd or 3rd round of TOBI (coupled with a separate oral antiobiotic) to combat this bacteria.

In typical Dean fashion, he adjusted quickly and went with the flow.  He had his moments but overall, did great.  He...amazes...us.  After the 28 day cycle, Dean had a throat swab and the culture came back psudeomonas free.   

We are in the clear.  No cough, cold, congestion.  I quickly learned to stop complaining about the normal 30 minutes of treatments that he has daily and I am believing that they too have to be working.  I constantly learn each step of the way, not only medically (learning new terms and what questions to ask, new precautions to take) but also have learned to be more content.  I can't predict and plan what is going to come up so I've learned to appreciate the little things (so cliche right) but it's true...

...the silly comments that the kids make, the crazy loudness that a Sunday conga line brings, the fascination and wonder about how in the world our ELF got into the fishtank, the smile that only one of your own can bring.  They live in the moment, I am so trying to get there but as a start I'm more content than ever, more thankful than ever, more blessed than ever.

No more PA video message from Dean!

click on the subscribe to our blog on the left to get updates delivered via email or through a reader

Boomer Esiason said my Chicken Salad is tremendous!

Abbot Laboratories sponsored a contest, the CF Chef Challenge, to launch a new online nutrition resource that allows those of us touched by cystic fibrosis to share recipes.  CFers need to maintain a high calorie, high fat, high protein diet because they burn more calories than normal because their body is working hard to deal with all of that sticky mucus.  So those low fat, low calorie recipes that many deal with daily just won't do! 


To launch the site, they held a CF Chef Challenge, where you submitted a recipe (and your CF story) and a winner was chosen in the Breakfast, Lunch, Dinner and Snack categories. 


The judges (Michael Symon from the Food Network, the legendary Boomer Esiason, Ali Christensen from America's Got Talent and a CFer herself, and Suzanne Michel a registered dietician) held a taste test and chose the winners.  I can't claim to be a cook, but my chicken salad did take first in the Lunch Category!


Here is a link to the main website Chef4CF. 


Click here to see the videos of the taste test and the recipe.



One of the prizes!
My very own Chef hat
signed by the Judges!

Chicken Salad





And the media props:

http://www.multivu.com/mnr/52460-cfchef-recipe-challenge-winners (videos of the taste test)

http://idmanagedsolutions.usatoday.com/news/story.idms?ID_NEWS=210792987 (USA Today)

http://www.frankfortstation.com/Articles-Story-of-the-Day-c-2011-11-14-231600.114133-Cooking-for-Dean.html (Frankfort Station)

http://southtownstar.suntimes.com/lifestyles/food/8849352-423/frankfort-mom-wins-cf-recipe-contest.html (Southtown Star)

Halloween 2011

Happy Halloween from our bunch (a witch, WaLuigi, a pumpkin and a monkey).  Fun times with all the Halloween activities and way too much candy.  I'm having a hard time not swiping a Snickers everytime I pass the large purple bowl!

We're all on the mend over here, feeling a lot better, adjusting to the new treatments and looking forward to the launch of our 2012 Fundraising committee - our kick-off is Friday, November 4th at 6:30pm.  Contact us if you'd like to be a part of it.  We need all the help we can get!