Wednesday, July 9, 2014

Melts our hearts and our ice cream.

Super fun day for our Rosebud CF Superheroes!  We were able to deliver some super-sized checks to the Reaching Out Foundation and the Cystic Fibrosis Foundation!!!

First we met Susan Burroughs, the founder of the Reaching Out Foundation.  She helps local CF families that are struggling financially.  Some months there are CF families that have to decide if they will spend their money this month on groceries for their family or CF meds.  Susan is there to help so they don't HAVE to make that choice but can instead afford both.  The ROF is such an important part of our Georgia CF community.

Next we met with the Cystic Fibrosis Foundation that helps fund research on a national level.  Their funding of research has resulted in several of Elena's current meds that keep the difficulties of life with Cystic Fibrosis at bay.

We were treated to ice cream on this hot July day!  The kids really liked this day.  Lunch cream...and zip lock baggies of gummy bears to take home.  Made for a wild afternoon!

The Rosebuds are so thrilled to be a part of making the world a better place through their involvement with Miles for CF.  Our teams 65ROSES (Super Adults) and Rosebuds (Kiddo CF Superheroes) are quite a dynamic duo!  Thank you to the people behind these organizations that are truly making a difference in the lives of those with Cystic Fibrosis.  We are thankful for EACH of you and your dedication to adding tomorrows to those living with CF!  You simply melt our hearts!

Tuesday, July 1, 2014


Elena had her follow up with Dr. McKean today and this is what we learned:

-She has edema in her lower left lung.

-Her lung function is still down and Dr. McKean has decided to call it.  She has a new normal which is unfortunately low.  That is not news a CFer wants to hear.  That was the only bad news we got today!

-Fungal and bacteria free according to the bronchoscopy results!!! NO Pseudomonas!!

-We have one outstanding test we are awaiting results for that we should have before the end of July.  It is a TB like test.

-She is NOT allergic to peanuts, Brazil nuts, coconuts, or pecans. However she IS allergic to almonds, cashews, sesame seeds, pistachios, and hazelnuts.  We have added that to the list with soy and dust mites allergies.
-The upside...she can eat all the boiled peanuts and candied pecans she desires!

We will continue 3 a day treatments in hopes that we can get an improved lung function at her appointment in 6 weeks back at this office and prove this low "new normal" WRONG!

To celebrate, we went to IKEA...wait, what?  Yes, I took 4 kids into IKEA. It sounds like punishment but it was fun because it was a giant building full of rooms to play house in!  We were on a mission to find a cart for Elena's vest and nebulizer.  We found it!  We brought it home and Elena put it together herself.  Now she can move from room to room with ease to do her treatment where ever she pleases.  This is a very big deal!  This machine is HEAVY!  Two thumbs up for making CF living a little more fun and all with a little rolling cart.

We will be back to our awesome CF dr office in 6 weeks to show CF who's boss.

Want to see what my family is up to?