Tuesday, August 16, 2016

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
video


2016- Student's Choice

Tuesday, July 19, 2016

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


Saturday, May 21, 2016

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.

Sunday, April 3, 2016

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:
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!

Tuesday, March 29, 2016

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!

Sunday, March 20, 2016

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:

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.


Wednesday, March 9, 2016

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 

Friday, February 26, 2016

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:):)

Want to see what my family is up to?