Browsing Tag

cystic fibrosis

Blog & Events, Video

Holiday Songs with the Vest

August 31, 2011

Having some fun with the vest…holiday caroling!!

This is a great thing to try with younger kids, especially if they have to spend the holidays in the hospital.  It happens, let’s make the best of it!

Claire Claus Sings Christmas Songs

 

Blog & Events, Video

How I prepare for upcoming surgery!

August 31, 2011

Claire explains a little bit of her tools for preparing for surgery.  For other kids going through similar situations, hopefully this will help you!  There is also a more professional video on the CF University page of this website called “Tips and Tricks: Relaxation 101”

Video ~ Preparing for Surgery

 

Blog & Events, Video

Trying an Experimental Treatment and Preparing for our Flash Mob!

August 31, 2011

Claire talks a little about starting a run of Methotrexate..it is a cytotoxic drug that helps lower the number of white cells that cause all the mucus in the lungs.  If you haven’t heard about this approach for cystic fibrosis, you can read more about it here:  CFF.org article regarding Methotrexate and cystic fibrosis

Claire also talks a little about getting ready for our upcoming flash mob on May 1, 2011!  So exciting!!

Video ~ Methotrexate and Flash Mob

 

Blog & Events, Video

The Miracle Walk!

August 31, 2011

MIRACLE!  Claire’s first walk post coma, June 2010.  Here she is with her step mother Elizabeth and Ingrid, her dear friend, filming.  All the nurses and doctors were escorting her and managing her equipment.  Quite a miraculous day for our family considering 2 months prior to this, she had a 1% chance of surviving her septic coma.

You can see that her sense of humor stayed intact – 🙂

Glorious First Walk Post Coma Video

 

Blog & Events, Video

Good News Update May, 2010!

August 31, 2011

This is a video that Claire made in May, 2010 a few weeks before heading home.  In total, she spent 3 months in the hospital recovering from a septic incident post surgery.  We were so thankful that she was able to graduate off of the high flow oxygen mask to a simple canula and that we have high hopes of recovery.
Never give up hope!

Good News Update Video with cameo by dear friend Kate Savage: