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: , , ,

Make a Wish

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Jenna had her wish to meet a dolphin granted in April by the Make-A-Wish Foundation. This amazing organization grants the wishes of children with life-threatening diseases, whether they wish to go somewhere, meet someone, be someone or have something. We were

Posted in Blog Posts, Fabric of Life, LCH and Chemo 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

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The Summer of Learning to Live Again

View from the Queen Mary deck

The summer of our Learning to Live Again project was kicked off with a trip to Long Beach, California, for my birthday. We haven’t flown anywhere in about 2 years, not since Jenna has had a feeding tube. We weren’t really

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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

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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: , , , ,

Learning to Live Again

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As we approached the end of Jenna’s chemotherapy earlier this month, we thought about what might change once her treatment was finished. The more we thought about it, the more we realized… not a lot. She still has the feeding

Posted in Blog Posts, Fabric of Life, LCH and Chemo 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: , , , , ,

13 Most Popular Posts of 2013

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This year my focus was mainly on my family, specifically, caring for our now 2-year-old daughter as she has gone through chemotherapy and treatment for liver damage. As 2013 comes to a close and I look back at all we’ve been

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

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