We’re back and we’re better for the visit with Dr. Wonderful. The news is that there isn’t any earth-shattering news. Nonetheless, when we leave her office we always feel like we know more. Like we can be better parents. Like she heard us. Like we have input.

Highlights:

Dr. W added a med to Quinn’s regime to help her excessive urination problem. We’re hoping to see a change in the output soon. It would be nice for her not to wake up pee-soaked. She’s at 6 total meds per day, most 2 times per day.

Dr. W changed some med dosages, added another liquid to Gage’s regime bringing his total to 10 meds, most 2 per day and that lovely shot once per week. Tuesday is our “special” injection day – Happy Valentine’s Day, Gage. When Julian smelled the new med he said “this isn’t so bad” and after I encouraged him to taste it as I do for all liquid meds I’m asking the boy to take, his face contorted in a “this is nasty crap” shape (Gage thought it was funny) and he became a tad more compassionate about encouraging Gage to take the med. I’m happy to report that after a week of the smells-okay-tastes-like-crap medicine, Grandma has come up with the perfect method. It includes us mixing the med with a tad of lemonade, then as we turn to put the lemonade in back to the fridge, we say “now don’t drink that before I’m back!” and Walla…med is gone from it’s Dixie cup. Gotta love a Grandma who can make that happen.

Dr. W would like us to consider having a more meticulous genetic test on one of the kids. The thinking is that it might allow us to find the kids’ particular gene mutation and that might help us find other people that are affected (by writing medical journal articles about them?) with this particular kind of syndrome – the one that includes ARPKD, Ocularmotor Apraxia and various other symptoms affiliated with another kidney disease – that I happen to be too lazy to look up the spelling for at this particular moment. This would cost a considerable amount of out-of-pocket cash and wouldn’t change the course of treatment, so we’re thinking it over. I admit it would be nice to know if they could identify a mutation…but then what?

Dr. W isn’t so anxious to put a timeline on transplant for Gage. She keeps reiterating that there is no way to predict. She’s on to us – no matter how many times we ask her, no matter how we phrase it a million different ways, or beat around the bush, she won’t commit. So, we wait. It could indeed be 12-18 months as Dr. Matter of Fact suggests, or it could be later. No way to know, no matter how many ways I ask the question.

Here’s the dance card from Dr. Wonderful from this visit. She loves to draw out what she is trying to explain to us common folk and we love her for it. It’s a strange dance, the one between Dr. Wonderful and us. Thank the Goddess she’s the one leading. That’s all I can say about that.