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Author Archives: Julia Roberts
School, Bears, & Tears
This is going to be one of those posts where I have a lot in my head but don’t want to enter in 4 different posts, so this is what you get. “You get what you get and you don’t … Continue reading
365 Days of Kidneys, Day 68
Did you know? There are so many little things to learn about kidney failure and transplant that you don’t think about until you’re faced with it at transplant time… A great example is that if they can, surgeons leave the … Continue reading
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Tagged ARPKD, arpkd diagnosis, arpkd/chf, CKD, kidney disease, PKD, PKD Foundation, support for arpkd
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365 Days of Kidneys, Day 67
Transplant terminology. It’s procure not harvest. It’s living, unrelated related donor. It’s deceased donor. Also? I think I could get a job consulting on television shows about how to handle kidney failure, kidney transplants and dialysis. Hire me! I’m talking … Continue reading
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365 Days of Kidneys, Day 66
Finding the right care team is one of the most important things you can do in the care of a chronic illness of your child. I recently changed pediatricians and I’m so surprised, just 3 weeks into our first appointment … Continue reading
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365 Days of Kidneys, Day 65
The thing about star power is that it brings terrific awareness to causes. Happy to hear that Sarah Hyland of Modern Family fame has gone public with her kidney condition and about the new kidney she got from her father … Continue reading
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(Special Needs) Motherhood, You and Me
Today I honor all mothers…young and old, and attachement style moms, birth mothers, step mothers, mothers of all kinds. Liberal or conservative mothers, I honor you. I honor moms who breastfeed or bottle feed and the mothers whose kids play … Continue reading
Posted in Raising special needs kids
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365 Days of Kidneys, Day 64
The concept of paired kidney donation is explained here. Basically, you bring a donor who does not match you and you swap with another recipient who brings a donor that doesn’t match them. Post Footer automatically generated by Add … Continue reading
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The Catapult Experiment
Last Friday we visited Gage’s school for what was the exhibit of the school’s science fair. Gage spent a couple of months on an experiment using a catapult to see if a long arm or short arm or if pulling … Continue reading
365 Days of Kidneys, Day 63
When (you or) your child is being worked up for a transplant – it’s actually and evaluation. At this time it’s not decided that a transplant is needed. For us, Gage’s was immediate because at that first visit with the … Continue reading
Posted in 365 Days of Kidneys
Tagged ARPKD, kidney transplants, organ donation, PKD, PKD Foundation
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365 Days of Kidneys, Day 62
For our kids their transplant surgery recovery took about a week. Our first donor, Jody was in for 4 days and Cheryl, our 2nd donor, was in for 2 days. Cheryl heard that if you turned down heavy drugs, … Continue reading
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