Caregiver Support
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 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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