Wednesday, October 16, 2013

Test Results

The test results for Elena's recent culture came back negative!

Her lung function is down, but all else is well.  That is a victory in our book and we will take it!

Meanwhile, she is continuing to do her twice a day breathing treatments (30-45 minutes per session) plus taking her wide assortment of pills.  Thank goodness for maintenance medicines that keep her growing and strong.  Praise God for a wise doctor (with amazing staff) that looks at his patients as people whom he really cares about.

Sunday, October 13, 2013


Elena has been struggling with keeping her lung function up. We got rid of whatever germ was hassling her ear a couple weeks ago.  We thought the function would go up, but it didn't. Dr. McKean is running some more tests.  Meanwhile, she is doing great!  You would not know that the function is down.  Just another little bump in the road.  We also wonder if the testing was just off because she is not having any other problems and her lungs sound clear.  We will know more next week.

Why is this titled "first"?  Elena had her FIRST real audition on Friday for a student film.  She was trying for the lead.  She had so much fun and stated afterwards that she loved the crew.  Regardless of the outcome, she learned some new things. So exciting!

Wednesday, October 2, 2013

Rosebuds photo shoot

Thank you to the founder of the Reaching Out Foundation, Susan Burroughs, for taking the time to do a photo shoot with our little Rosebuds this morning. This is just a little taste of the fun stuff she caught on film this morning.

Tuesday, October 1, 2013

A Fun Twist on a Not So Fun Disease

Our Friend and CF Cybro, Andy Lipman, has been a great voice of CF for many years.  He now has produced a music video to send a message about life with Cystic Fibrosis.

"I Need a Nebulizer" features photos of people with CF, but especially two of our favorite CFers, David and Elena!


Here is the video “I Need a Nebulizer.” It’s a parody of Billy Joel’s “We Didn’t Start the Fire.”

Want to see what my family is up to?