First Day of School...8 Years Worth!

Over the 8 years we have been homeschooling 

(has it seriously already been eight years?), 

we have watched each child grow, learn, and love.  

Our school curriculum and classroom has changed as often as the weather.  

Homeschooling is part of our everyday life (yes, even in the summer and on the weekend). 

Cystic Fibrosis is intertwined through it all, but 

as you can see from these videos, CF doesn't steal the joy! 

Here is video proof:

2009

2010

2011

(no video this year...but look at these tiny people!)

2012

2013

2014

2015

2016

2016- Student's Choice

No vacation for CF

Oh Cystic Fibrosis...you won't let us forget about you, will you?

Summer is here and we are reminded of how quickly time flies when you are having fun!  Yet, we are also reminded that Cystic Fibrosis does not take a va-cay...like...ever.

How do you forget about Cystic Fibrosis and the lurking fear of how it can bring drastic changes to your kid's health at a moments notice?  My answer; you don't ever forget.  How can you forget that? Instead, choose to fill your days with silliness that may involve rolling down the car windows and screaming Justin Timberlake's latest catchy tune.  Create quiet moments together where you snuggle to read a book, watch a movie, color, or chat about your favorite moment you shared that day.  You keep everyone busy with field trips.  Did you know that grocery shopping counts as a field trip?  It can be more like trying to herd cats, but if you go to the Dekalb Farmer's Market it is a field trip for EVERYONE! My favorite distraction in life with Cystic Fibrosis is the search for ways to keep daily health care fun and exciting so compliance is at an all time high every moment of everyday...even summer days.

Our latest enhancement to Elena's daily routine has been fun for ALL OF US!  It involves her enzymes. Her enzyme pills must be taken anytime she eats to help replace the pancreatic enzymes that can not escape from her very sticky coated pancreas.  She takes 15 plus enzymes a day (not included her 15 plus various other pills).  Where do we store all these?  Pill bottles, you say? That wouldn't be much fun, but THIS is!

Elena had a CF doc appointment today.  We entered the office and we were celebrated by all of the staff. They give us kuddos for our parenting, cheers for each of our unique kiddos, and they put their ever-lovin'-giant-effort into the care of our child, Elena.  (And they also see Ev and Em for breathing issues and asthma). They are family! On top of that, they keep us entertained with their humor and joy of living this life. These people are amazing, and did I mention that Dr. Larry has dyed his hair teal?

Elena's lung function went down 1% to 81%.  Funny how time changes you.  That number use to make us sick to our stomach with fear.  Now we are happy it is no longer in the 70's.  She has had a cough and congestion that antibiotics won't get rid of.  She will try another antibiotic along with the one she is currently taking.  Elena will start back on Orkambi tonight after a several month break due to the effect it had on her kidneys.  She will take a drug to help counteract that kidney problem. She will add more to her already full plate of meds and treatments.  I know... she IS a rockstar.

Yes, Cystic Fibrosis. We know you are always there.  Reminders of how much you suck is not necessary, thank you very much. So, if you wouldn't mind giving my kid a break so we can continue to celebrate our crazy, exciting, Harry Potter themed camp creating, pool swimming, friend playing, Pokemon chasing, backyard shenanigan making, and overall pretty freakin' amazing summer...we would greatly appreciate it.

Sincerely,
Me, the Mother of E's who doesn't have time for CF bullying my kid

Here we go, Here we go, Here we go now!

Here we go...

Waking up early so treatments can be done on time to get us out the door to set up our team tent.

Here we go...

Onward with smiles and silliness as we tackle the rough patches in life with CF and just life in general

Here we go...

Spreading love and sharing friendship even during the darkest of times

Here we go...

Towards more deeply loving and wonderful friendships

Here we go...

With support and love by our side near and far

Here we go...

Working and fighting with many other people in our growing CF family.

Here we go...

with hope and love in our hearts

Here we go...

Towards a cure

Here we go...

Towards more tomorrow's

Here we go now. Check it out.

Soon I'll be Thirty Years Old

Here is Elena's latest fundraising project where she re-wrote the words to the "7 Years" song and made her new version titled "Soon I'll be Thirty Years Old". This is a song of HOPE for our CF friends and family! This young lady had me in crying, laughing, and completely in awe as I watched her video. My daughter, Elena, makes me strive to be the best I can every moment of everyday!!!:)

Donations can be made at:

https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==

and note that you are making a donation in honor of Rosebuds-Elena.

OR, you can be a part of booster tee fundraiser campaign!

Visit our site here:

https://www.booster.com/order-of-the-owl-wizardry-camp-helps-kids-with-cystic-fibrosis
The tee design is magical and the camp slogan on the back is fantastical.  Get one and get your wizard swag on while also helping us cast a spell to make CF stand for Cure Found!

As always, we are completely in awe of the amazing love and support we continue to receive as we fight Cystic Fibrosis as a family!!! Thank you!

Thank You!

So proud of Elena and her hard work to keep her team of Rosebuds a successful CF fundraising group. She works hard to spread the word and give hope to our CF community.  I hope to be like her when I grow up. :) 

THANK YOU to all our CF Superhero Supporters, Runners, Volunteers, Fundraisers, & Friends! We raised $4,440 so far since our race on March 20th!  Please consider helping us reach our goal of $6,500 by donating here: https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==

These little Rosebuds send you a high five and a BIG THANK YOU!

Rosebuds Success with Smiles!

If only we could all look this happy when exercising, right?! Our Rosebuds raised $600 more dollars today to go towards our fundraising efforts to stomp out Cystic Fibrosis one mile at a time. Proud of our CF Superheroes!! 

Seriously, who smiles so big you can see their dimples while running? Apparently this Irish cutie!

Ev winning at life and this race for his age group! He cried when the mascot crossed the finish line before him. He didn't realize he still won... Competitive kid? Nah.

The big E's completed the one mile race with giant smiles as well!

Thank you to all the runners (Johnston family and friends) as well as our wonderful cheerers that bundled up to join our cause!  

What a wonderful day to raise money for a fabulous cause on this first day of Spring! 

Want to help our donation dollars grow? You can place a donation here:

https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==

Be sure to note that it is for Rosebuds. Thank you for your support, love, thoughts, donations, help, and friendship! Together we can fight for our friends and family with Cystic Fibrosis.

12 Years

Elena said I blew her mind today when I had her listen, I mean REALLY listen, to the lyrics of "Let it Go" while we applied it to different situations in our life. She said, "Wow, Mom...WOOOOW!"

For the past 12 years it was difficult for us to drive to and away from CF appointments without anxiety. Finally, we are at a place where we have such peace about what comes our way in life and Elena handles all her CF junk with so much grace. 

The Goodrow Gang has been practicing finding happiness in all areas of life, even the ugly parts. Life is too short to dwell on the icky, right?  Today while driving away from the office of Dr. Awesome (Elena's superb CF Doc, Larry McKean), we were smiling, soaking up the sun rays, and singing "Let it Go" at the top of our lungs! 

It was the same old  CF story at the appointment. We will await sputum culture results to see what is bothering her lungs this week besides the weather. Meanwhile, Elena's lung function is up from the mid 70's and is back around 82%. That is a nice surprise!   CF; the continuous unsolved mystery! 

No worries here. We know we are doing everything we can to fight CF as a family. Until the results are in, we will continue to smile, soak up the sun, enjoy the ride, and let it all go.

  

Want to enjoy the ride with us? Consider joining our running team on March 20th or donate towards our fundraising efforts.

Learn more at www.milesforcf.org/rosebuds 

Rosebuds back at it!

If you have kids that are not mermaids and have extra energy to expend.... We've got the event for you and it's FREEEEE!!

So here's the scoop:

Atlanta Track Club's Fun Run and Dash
Be Healthy Georgia Festival in conjuction with the Publix Georgia Marathon and Half-Marathon
March 20, 2016

Kids 14 and under can run or walk with the Rosebuds team in the Be Healthy Georgia One Mile or Dash that is part of the Publix Georgia Marathon and Half-Marathon in Centennial Park in Atlanta.  NOTE:  THERE WILL BE NO 5K THIS YEAR!

Make it a family affair!  The adventurous ones in your family can run with Team 65ROSES in the Marathon or Half-Marathon while the kids enjoy their own race!  Miles for Cystic Fibrosis will have a tent and finish line party in Centennial Park after the race for a place to gather and celebrate your accomplishment!  Everybody can be a CF Superhero!

Kids will get to run across the same finish line as the marathoners and half-marathoners, and all participants will get a SWEET finisher medal.
​
Date:  Sunday, March 20
Time:  8 a.m. for One Mile Fun Run; 8:30 a.m. for 50 Meter Dash
            Be sure to arrive early!
Location:  Centennial Olympic Park  - Amphitheatre Park Concert Stage
                   (Marietta St & Centennial Olympic Pak Dr. NW, Atlanta, GA)
Distance:  Ages 7-14 one mile
                   Ages 6 and under 50 meter dash
Cost: FREE!!!!

Did you know that our team can earn a scholarship to be given towards our fundraising cause for having the most participants?!?!?! We are currently in fifth place! Invite your friends, your neighbors, your family and help us get first place!

Register here: http://www.atlantatrackclub.org/2016-be-healthy

Be sure to select team rosebuds.

Help our team win up to $1500 extra dollars for our cause of Kids helping kids with Cystic Fibrosis!!

Join Elena and her family and friends as we chase CF out of the park this March 20th. Speaking of Elena...

How's Elena? She's a long, lean, yoga loving machine with a zeal for acting and a great love of her amazing and supportive family and friends. P.S. She plans to kick CF's booty.  Won't you join us in this cf butt kickin' fun and register or support the cause by making donations here: https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==

 Life is short, let's spend it spreading good and love. Thank you for helping us share the love:):)

Organ Donor: Be one

We have a friend that is fighting for her life right now as she awaits a new pair of lungs.  This family is so very dear to us.  Their support during our own family sadness has been huge.  Cystic Fibrosis is being very beastly.  Hope is plentiful among this family and her many friends.

Last night I let Elena know what was going on with our friend, Joy.  She said she knew that things were not well.  We talked about lung transplants and what it means to be an organ donor.  Elena asked, "Why wouldn't everyone be an organ donor?" Great question.  Many people just do not know they can be. Then she was quiet for a moment followed by her saying "No one would want my CF lungs."  I said, "No, but they could use other things like your eyes, your heart..." which she said, "I have pretty eyes and an awesome heart."  YES, yes she does.

Cystic Fibrosis, oh what a beast you are.  You have taken so many people on roller coaster rides that were not the fun kind.  You have robbed people of loved ones.  You make people fearful for their future.  You take precious time from people each day as they work hard to defeat you.

Nope. Not in my house and on my watch.  We will take this roller coaster ride, we will embrace each moment we are given, we will not allow fear of the unknown, and we will never stop fighting to defeat you for our daughter Elena and her many friends with Cystic Fibrosis.  Life is short.  There is NO time to waste being angry, sad, lost, mad, scared, disappointed, or confused.  We are so thankful for the people in our life that recognize this and share this mentality.

Get the word out!  Be an organ donor.  Elena is asking you on behalf of all those who may be in need of more tomorrows.

Sizzlin' CF to a stand still

The Labor Day Big Peach Sizzler was today.  This race is organized by and benefits the Miles for Cystic Fibrosis organization.  The first year for this group was 2007.  The Goodrow Gang was there and there we have remained.  We love this group and all it stands for: Raising awareness of Cystic Fibrosis, collecting donations for vital research through the Cystic Fibrosis Foundation, and lending a helping hand to those in the CF community with financial needs through the Reaching Out Foundation ALL while promoting a healthy and active lifestyle.

 

This year we wanted to remind the Big Peach Sizzler 10k runners to think: #whyirunmiles4cf

 

The idea started 5 years ago when I saw a CF dietician running with her patient's names written on her arm to inspire her as she ran.  Her idea would grow into my finding 13 inspirations with Cystic Fibrosis so I could dedicate each mile of my half marathons to one of my CF friends.  The first mile is always the first person I met with CF following Elena's diagnosis (David Adkins...my mile 1 every time!)  The last mile is always my Elena.  She waits for me at the end of the race and I hug her before I finish that last .1 mile of the half.  My CF family has grown and as many of you may know, it takes a village to support our CF families.

 

The Sizzler race is 6.1 miles. 

So we have 6 fabulous CF BIG face signs that were held high at each mile marker. 

 

The runners enjoyed the noise, the costumes, the music, and the reminder of

#whyirunmiles4cf

 

Our mile marker was a muggle free zone.  We represented each house of Hogwarts.

 

Here you have Hufflepuff.

 

Ravenclaw

 

Slytherin

 and...

Gryffindor

 

We enjoyed having our Viking friends join us bright and early for the Mile 1 party palooza!

Mile 1 had a lot a lot a lot of cowbell.

 

The runners just kept coming!  We saw several CF supporting friends run by!

 

The highlight of the day was the Awards ceremony.  We finally met the face behind the magic of the Hogwarts Running Club (www.hogwartsrunningclub.org)

 and his lovely family.  Our CF family just grew a lot more!

 

Hogwarts Running Club was amazing. They surprised us by adding a TWO to the FRONT of our $5,000.00 check...

That's right, they donated $25,000.00 to Elena's team Rosebuds after they heard her story earlier this year.  It was such an amazing surprise that there were very few dry eyes in the group. 

 

THANK YOU HOGWARTS RUNNING CLUB!!!

 

I leave you with a reminder of what Cystic Fibrosis does to our loved ones.

 

CF hoards time due to treatments, steals freedom because of surprise illnesses suddenly sprouting up, thunders through days spent at doctor offices and hospitals, crashes down on family events, sucks dry bank accounts to pay for treatment & meds, and strikes fears into the hearts of CF parents that worry about one day...

 

CF may take away the life of their little one as it has done to so many others. 

Dear CF,

CF, I hope you have your boxing gloves on because this CF family is ready to fight. 

I know exactly #whyirunmiles4cf and you are gonna lose this fight.
Sincerely, a CF mom with a lot of strength and sass

 

CF does not slow this kid down at ALL

Week one of school is behind us.  I'm pretty sure this has been our best first week ever!

We have done a "First Day of School" video since Elena was in Kindergarten. 

Day 2 of school...why not go zip-lining and learn about nature on the hike to the tour start!
Yes, please!  This was AFTER Elena had 10 vials of blood taken for annual labs...how does she DO it?!?!

Day 3 was a home day where we enjoyed the cooler weather and Elena dove right into her school work. 

She is loving the flexibility of being at home and doing her school work in her new grown up bedroom.

 

We ended the day with a family science experiment. 

We did this experiment our own way for sure.

Day 4 we were back at our homeschool CO-OP where Elena taught her very own class!  She did so amazingly well.  I had the honor of being her assistant (although she needed NO help).  Elena is such a mature young lady.  Cystic Fibrosis is no piece of cake to manage.  Maturity helps her manage all she does with such grace.

 

Day 5 was all about exercise! Lungs stay strong when you exercise regularly. This is important for everyone, but especially for those with Cystic Fibrosis.  Elena and her siblings know this, understand this, and are always happy to help with this!

 

 

Days are hectic, but yet they don't feel as such when you are surrounded by so much happiness and great friendship...and coffee.

Mile 1 Dedication to our little grown up girl!

Mile 1 for Elena and all of her giant eyelashes!

This Labor Day we are doing things a little different with the Big Peach Sizzler 10k benefiting Miles for Cystic Fibrosis. Who doesn't  love to get up early and act goofy for a couple of hours? We will be up early on the morning of Labor Day with noise makers, costumes, wigs, cowbells (I've got a fever and the only prescription is more cowbell), and any shenanigans we can muster for a couple hours. Don't worry, we have a karaoke machine. The locals are gonna love us! Why are we doing this?

We want to be the loudest and craziest mile marker on the course! If you would like to be there in spirit, you can make a donation at the link below. My parents got our fundraising off to a great start by getting us only $500 away from reaching our goal (go Mom and Dad!)We have dedicated the first mile in honor of Elena. Our goal this year with the race is to have the runners see faces of those with CF at each mile along the 6.2 mile course so they recognize where their registration dollars are going. 

Link to donate is below:
https://www.razoo.com/story/Elena-S-Eyelashes-Will-Wow-You?referral_code=share

Show Love Under All Circumstances...even when CF weighs you down.

Elena has been making little videos.  Her latest was about her family.  She gets the importance of taking care of herself so she can take care of others.  She understands the value in showing love in all of her actions under all circumstances...yes, even when she is irritated by the daily hassle of her CF routine that doesn't seem to be improving her lung function month after month.

Elena is growing up so quickly and Cystic Fibrosis continues to be a challenge that she hits head on each morning with a smile on her face and her siblings by her side. 

That, my friends, is living life to its fullest. 

As our dog Flanders has taught us all, "Wag more, Bark less".  Trust me on this sound piece of advice.