It’s not a pretty post today. Rarely, when you are discussing urine and the amounts of urine is it pretty.

We’ve had a ton of problems with Gage and his concentration (or lack of) of urine because of ARPKD. I’ve neglected to send an update about it, since we were trying to get a plan in place to deal with it, and really, I was always afraid when Gage is 15 he’ll find all of these updates in the journal of our journey, and he’ll be so mad. Then I started thinking, he’ll be a teenager, he’ll have a million reasons not to dig me. I’ve decided that if he can handle another person’s kidney in his body, a strict regimen of anti-rejection drugs, he can handle a little public pee discussion, back when he was 5.

I call everything that we do, around the pee thing: The Urine Factor. Because it seems to control a multitude of other things. We have to factor in where we are going, how long the drive will be and how long we’ll be there, how many changes of clothes we’ll bring, and who’ll we’ll be around that we’ll have to explain it all to, if in fact there is an accident. Not everyone in our daily routines (school friends, sports activites) knows about their problems, but it’s hard to explain the pee thing without going into all the other details. And my Inner Defensive Mom (IDM), wants everyone to know there is a reason for the accidents. I think it is harder because they look healthy.

It’s been a struggle. 1 day out of 7, no accidents. The other 6 days, 1-4 accidents. He’s been saying for a long time "I can’t feel it coming" and on top of that, he’s had some behavior/testing us about the pee thing, and I frankly, was (am) barely holding on. We’ve been trying everything in the positive reinforcement arena with little success.

I have been saying since late summer last year that his inability to "hold it" was a combination of his behavior (one of the only things he has power over) and the volume of urine he produces, and that my friends, is one bad, smelly mix. So finally, after a desperate sounding email to our Bama Neph (I’ll call her Dr. Wonderful), we are taking Gage there to discuss some medicine options. We would treat it like nephrogenic diabetes insipidus or water diabetes. So we’re headed to Bama, probably in the next month to deal with that. Dr. Wonderful pointed out that he also is just probably angry about the whole thing, hence the behavior part. I guess I can’t blame him can I? I mean, I know how I feel about it and he is only 5.

Hopefully soon, we’ll be able to have less of The Urine Factor in our lives.