Living in Chronicity
Posted on February 25, 2008. Filed under: Caregiver Support, Living in Chronicity, Nutrition, Social Issues, caregiver | Tags: feeding pump, moms, signing time, special needs, staring, TPN |
It was near the end of last summer when I took my girls to see a live Signing Time show at a local school theater. Having been long time fans of Rachel and the amazing work she does for the hearing impaired, I made sure we got there early and got a front row seat… [...]
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Posted on February 5, 2008. Filed under: Living in Chronicity, Social Issues, The Science, cystic fibrosis | Tags: cystic fibrosis, Living in Chronicity, smoking |
Secondhand smoke is deadly. Dangerous. Downright dirty. So what’s the news? Check out this JAMA abstract to see the facts of the effects of secondhand smoke on those with CF. Another article here.
For those living with cystic fibrosis (or other lung diseases, for that matter), secondhand smoke is, essentially, the devil. [...]
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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 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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Posted on November 28, 2007. Filed under: Living in Chronicity |
I serve as one of three volunteer parent coordinators for a program at our local children’s hospital called Project DOCC. The program was started by three moms out of New York who were caring for their chronically ill children. The curriculum is designed to teach pediatric residents about living with chronic illness or [...]
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Posted on November 26, 2007. Filed under: Living in Chronicity |
As life would generally have it, we don’t get to pick and choose the most opportune times to require medical assistance, but chances are that if there is a major holiday involved, the probability that we need a doctor goes up exponentially.
Allison had been struggling all week with something I just couldn’t quite put my [...]
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