Quinn’s Potential Donor #1 emailed me early to let me know she was at the hospital waiting for day one testing to begin. She just sent me a text to let me know that she was already drinking a diet coke at a pizza joint.
I don’t think she should be drinking diet coke, do you? Because you know, we get to have some say-so now.
Quinn is pretty tired these days often sleeping 13-14 hours a night if we let her. It is the nature of kidney failure. You just want to sleep and not eat. Except Honey Buns apparently.
Quinn is amazing in that she wants to do swim team this year. I hear “She doesn’t even look sick!” all the time when we talk about her getting a transplant soon. That is what PKD is…near invisible. Tuesday night she was at the pool something like 6 hours before the meet was called off due to loss of power. There was such a difference between last year and this year. Last year she wanted one of us near her while she was in the bullpen with all the girls. This year? Practically disowning us once we were in sight.
She’s a piece of work. Or as Dr. Wonderful has said many, many times, “That Quinn, she’s a mess!”
Oh how I love her and how I love that QPD#1 might be able to give her the chance to side step dialysis and have a better quality of life. Quinn deserves that and so much more for the big life she’s had since those words I heard when she was two days old , “She has polycystic kidney disease, and she’ll need a transplant to survive.”
That was nearly 8 years ago, and yet tell I get choked up and tears fill my eyes when I type or say those words today. Sure, I’ve moved on from that day and become the mom to the kids that have needs on top of needs, and a mom that is mostly accepting and happy.
But I’ve not forgotten how desperate I felt those first few days of learning what our family would deal with (and even then I didn’t have a clue) for Quinn and then learning Gage had it too. And then beginning the treadmill that is our existence, while trying to balance the needs my marriage, my friends and family – and somewhere trying to hang on to my own needs. And figuring out my needs change nearly as much as the kids. When Quinn was born she threw my little world off its axis, and it’s not quite been the same since.
And Quinnlin Bay? She deserves every chance that QPD#1 is trying to give her – I don’t mind saying that. She deserves the chance to bypass dialysis. She deserves to do everything a healthy body will let her. She deserves that and so much more. And QPD#1 sees that too. We’re so lucky.

Okay, you’re right on two points:
1-I should switch over to water & unsweet tea
2-& most importantly, Quinn deserves a healthy body & the chance to continue to ignore her parents when she’s with her girls!
Hey Julia!
I’m so glad things are moving along with PD #1. I actually have a few questions about the process if you don’t mind me asking them? Matthew just got written up for his transplant evaluation to take place. I was wondering how hard to I have to ride them so to say? Is it Egleston that usually has the hang ups or Emory? Dr. G in hemo said about a week and a half ago he would order the transplant paperwork through. Dorette then got the insurance info and ss# of Matthew the following Monday (last Monday). How long do I wait before I say..Hey…remember the wiggle worm who’s body is being emptied of blood over there?? What about getting us ready for a new “normal” way of life? I don’t want to be labeled a “problem”, but have no issues with being labeled “on top of things”. Any suggestions?
Karen, let’s talk privately either by phone or email…I have lots of advice! This is our 2nd go’round so I have some “been there, done that,” perspective.
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