Every once in awhile during the day I forget Elena has Cystic fibrosis. She is doing so so SO well!
She is running,
Any sickness she has is thrown off so much quicker than in the past.
When she is well, it is very easy to forget how dangerous it can be to expose her to germs. Cystic Fibrosis....there is never a time to be lazy about it.
I could get lazy with cleaning her neb supplies accurately. I could say, "You are doing so well, just skip that treatment tonight." I could tell friends and family "Don't worry about the (fill in diagnosed germ here). Let's get together anyway."
And I have. I've done ALL those things at some time or another. Then I remember. Then I'm reminded.
Elena has cystic fibrosis.
I can not be lazy about her treatment or her protection from germs. I must always do my best so she grows up and learns to always do HER best to care for herself.
Why? Here's why.
We lost some more Amazing CFers this week.
An 8 year old girl ... 8.
Our Elena is 9.
We also lost Richard at 52 who coined the term 65roses. Learn more about him at this link:http://www.wptv.com//dpp/news/region_c_palm_beach_county/west_palm_beach/richard-weiss-who-coined-phrase-65-roses-loses-battle-with-cystic-fibrosis-at-age-51
These families did everything they could. I would want to know that we have done EVERYTHING instead of wondering if that skipped treatment is what caused the downward spiral.
Yes, we allow some down time and we are lenient sometimes. However, I will not forget that Elena's life truly depends on the regularity of her Meds and the protection of germ exposure.
We will fight for her. All 6 of us in our home work as a team everyday to make sure Elena is taken care of. Her team expands well beyond our four walls and we are thankful for so much love and support.
Please consider joining our cause www.milesforcf.org
There are events for everyone at all ages.
Or you can donate towards our cause here:http://www.razoo.com/story/Super-E-S/mobile?referral_code=share
Thank you to everyone for following Elena's health updates and for sending your thoughts and prayers our way. Even when Elena is doing great, we still have our bad days when CF wears us down. Your words and support make us want to jump in the air with a smile!
Thank you to our support team beyond our four walls!! (Hey, that's you!)