Archive for January, 2008
Posted on January 31, 2008. Filed under: Caregiver Support, Living in Chronicity, cystic fibrosis | Tags: cystic fibrosis, faith, lung transplant, prematurity |
…on my heart and in my mind Tricia, Nate and Gwyneth. You’ll remember a few posts back when I posted “To be in Love…” about Tricia’s journey toward a double lung transplant was suddenly halted when they discovered that they were pregnant with Gwyneth. I have seen many miracles in the [...]
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Posted on January 31, 2008. Filed under: Caregiver Support, Living in Chronicity, Raising the Bar for CF Care, cystic fibrosis | Tags: cystic fibrosis, hospital, iv antibiotics, travel |
… or not? That was the question.
When you “live in chronicity” (or parent someone who does), you exist somewhere between those people who can make plans and keep them and those forced to mark every “commitment” down in pencil. For example, I recently took a trip out West to visit another CF care [...]
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Posted on January 30, 2008. Filed under: Raising the Bar for CF Care, Social Issues, The Science, cystic fibrosis | Tags: Advocacy, CFF, Cure, Cytic Fibrosis |
These are exciting times indeed!
The CFF wins again… sort of. It’s no small feat for the Cystic Fibrosis Foundation’s care center network to be recognized by The National Institutes of Health as a model for the delivery of care for those with a chronic disease. Even more surprising for some was the bold [...]
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Posted on January 11, 2008. Filed under: Nutrition, cystic fibrosis | Tags: calories, cystic fibrosis, Nutrition, weight |
Did you realize that for most people living with CF, gaining weight is a tremendous struggle? Many of us complain about having to lose weight, reduce our food intake and watch what we eat to be healthier… can you imagine the if the opposite were true? Sure, it sounds tempting initially ~ to [...]
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Posted on January 9, 2008. Filed under: Raising the Bar for CF Care | Tags: chronic, cystic fibrosis, illness, Project DOCC |
Not being one to leave well enough alone, I’m constantly on the lookout for new and innovative ways to implement family centered care practices into our healthcare settings. Taking a page from the Project DOCC program, I began to contemplate the possibility of taking it to the next step: instead of addressing a [...]
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Posted on January 8, 2008. Filed under: Books, Caregiver Support, Living in Chronicity, Social Issues |
For those not in the “know” ~ “sixtyfive roses” is often what little kids call their disease when they find “cystic fibrosis” too cumbersome to pronounce. The term was coined by the Foundation and has been used for decades, citing this story about a CF mom and her young son.
I just completed reading Sixtyfive [...]
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Posted on January 8, 2008. Filed under: Living in Chronicity, Uncategorized |
… and then be faced with the daunting reality that your beloved lives with a condition that will not get better; that will continue to ravage the basic functions we rely on… namely a condition that takes our breath away.
Check out this blog from Tricia’s husband… and their very current and very personal journey toward [...]
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