Blog Archives

No More Feeding Tube!

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As Jenna’s liver doctor watched her chowing down on pistachios last week at our quarterly visit to get Jenna’s feeding tube changed, he said, “Let’s try it without the tube.” Wooooooo-Hoooooo! “I feel like jumping up and down,” my husband

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , ,

The 9 Months In–9 Months Out Theory

Jenna clown with Daddy

When I was pregnant with my son and my body was expanding in every direction, I asked my midwife, “How long will it take for my body to get back to normal?” She said, “Most women take about 9 months to get

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

Our 12 Favorite Charities

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On our journey traversing the medical world with our daughter, Jenna, we’ve been honored to be assisted by and involved with some amazing charitable organizations. In the spirit of the holidays (and Giving Tuesday), here are our favorites. All are wonderful

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

Tiny Sparrow Foundation

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Earlier this year we became a recipient of Tiny Sparrow Foundation, a non-profit organization that provides enduring memories through the beauty of photography to families with children who are facing life threatening diseases. By coordinating with photographers nationwide, they gift each family with

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , ,

52 Pillows – #33 – The Liver Pillow

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Lots of body parts enjoy the benefit of pillows… Our heads sink into pillows each night. Our backs rest against cushions. Our bottoms are cradled by cushions. Our feet enjoy being propped on pillows. But what about our internal parts,

Posted in 52 Pillows Project, Blog Posts, Fabric of Life, Home Decor, Liver Transplant Tagged with: , , , ,

A Silent Warrior

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For most of the past two years, and for no obvious reason, I’ve been pulled from sleep once or more a night by pounding in my ears and racing heart. I’ve thought for a while I should see a doctor

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

Living With Uncertainty

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Jenna, our 2-year-old, has had a feeding tube for over half her life now. When she first had it put in, I never expected more than a year later she would still need it or that we would have made

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

Good News and Different News

Our little sweetie pie!

We threw caution to the wind after Jenna’s liver biopsy last week. We figured whatever the results of her biopsy, things would be changing again and it may be our last chance for a while to not worry incessantly about

Posted in Blog Posts, Fabric of Life, LCH and Chemo, Liver Transplant Tagged with: , , , , ,

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