Saturday, August 29, 2015

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?!?!



video

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.

Friday, August 21, 2015

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

Monday, August 3, 2015

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.

Whatever...I'm getting cheese fries.

 
For a diet of a CFer, we can all share this sentiment.

As she orders them she requests more cheese...more...a little more...umm more...that's good.
 

Then she does stuff like this and can still hold it down.  THAT is talent, my friends.
 

Sing it sister!
 
 
 

Want to see what my family is up to?