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Category Archives: Kidneys in general
Healing through music.
A couple of years ago I heard about a baby who had been born with ARPKD, as I often do when someone calls the PKD Foundation. His name was Myles. I didn’t speak to or know anything about the family … Continue reading
Posted in Kidneys in general, Story telling, What others take for granted
Tagged ARPKD, Lullabies, music, PKD Foundation, Sara Mann, Tears in Heaven
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365 Days of Kidneys, Day 1
Our kids both have a chronic kidney disease (CKD). They are among 26 million americans who suffer from a CKD. Theirs is a rare form of a common kidney disease called Polycystic Kidney Disease. Both of us parents (unknowingly) passed … Continue reading
Posted in 365 Days of Kidneys, Kidneys in general
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Who deserves a kidney? CHOP says no kidney for Amelia.
Quinnlin’s & Cheryl’s kidneys Yesterday my friend Cecily sent me a link to a blog post by mom, Chrissy, who had, just a day earlier, been told her daughter’s life wasn’t worth the amount of effort it would take to … Continue reading
Bejeweled Patient & Box O' Love
Yesterday Quinn got a big box from Dawn shipped from Ohio. A while ago Dawn spread the word on her blog and twitter that Quinn was about to get her ears pierced and she wrote this great post about my … Continue reading
Complicated
My Gage; he is complicated. No surprise to anyone out there with a routine-craving child that we’ve had some difficulty with re-entry into the real world since returning from the fabulous NYC trip. Gage has had a considerable amount of … Continue reading
Just to recap…
Dawn sent me an email earlier to ask where in the process we were with the evaluation for Gage. I’m not suprised she is confused, because, frankly, I am confused. I’ve been going so much on Momma-Just-Get-It-Done- Instinct that I … Continue reading
Waiting sucks.
This much I know. The reason I know this is because I do it a lot in the care of my kids and they do it a lot. We wait for results of tests, we wait in waiting rooms, we … Continue reading
Using the Cute Faces
Ever since I was invovled with the PKD Foundation when Quinn was 4 months old I’ve let them use our family story for awareness. At first, I didn’t think much about it. Since then I’ve had to weigh the pros … Continue reading
Posted in Kidneys in general, Story telling
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Hey, you! Yeah, you.
You know who I am talking about . All of you staff people at the PKD Foundation…I would be talking to you. And about you. I realize I am only 2 days post Convention, but I had to say THANKS … Continue reading
Posted in Kidneys in general, Story telling
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Repro.
For the first time in a long time I have been thinking of the ramifications of transplant on Gage and Quinn’s reproductive systems and choices because of a session called “Reproductive Issues.” There are immunosupressant and BP drugs that have … Continue reading
