Ellis receives Chest Physical Therapy (CPT), or what we call her "pounds", twice a day. It involves pounding her chest, upper back, sides, and lower back with a device (we use infants oxygen masks) to loosen the mucus from lungs. Her pounds last for 20 minutes, adding up to 40 minutes of therapy a day. Right now, this treatment is preventative. Ellis' lungs are clear at this time, and we want to keep any mucus build-up from occurring in her lungs.
Here is a short video demonstrating the CPT Ellis has been receiving since 2 weeks old.
On November 1, 2010, our daughter, Ellis Rose, was diagnosed with Cystic Fibrosis at 7 days old. Our family is now committed to finding a cure for this illness that 70,000 people around the world suffer from. The first words our doctor said to us during our first visit to the CF Clinic were "We are very hopeful for Ellis". Hope is a word we hear a lot in the CF community, and it is the best way to sum up how we feel as we continue our fight against CF.
Thank you for sharing the video. I'm impressed with all that you are doing.
ReplyDeletei am so impressed, you are wonderful parents! love you tons!
ReplyDeleteEllis is very blessed to have you and Levi. You guys make amazing parents. So proud of you guys. love you guys.
ReplyDeleteThis actually brings me to tears. I just know how capable you and Levi are and it beyond words as to how touching and how blessed she and we are.
ReplyDeleteThank you all for the support! XOXO
ReplyDeletevery well put, Karen! :)
ReplyDeleteSweet message from Sally: This precious moment brought tears to my heart ~ every child should be so blessed with such love, patience and tenderness. What beautiful parents you both have become through the grace of your sweet Ellis. She is such a miracle! I watched the Papa, Daddy, Puppet video after to recollect my tears and laugh! These are the precious moments ~ much love and light to you all, including you amazing grandparents who remind us that we are not alone. -Sally Miller
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