It was a stunningly wonderful day on Saturday in Atlanta. Not too hot, not too cold. We didn’t have the turn out we’d planned and hoped for; but the group we had was awesome. Together, we raised about $55,000. That is not bad from the about 250+ people. I think the number will rise as donations can come in through November 9th.

We have the most dedicated people to help pull this off and without them this could not be done. You all know who you are and I am eternally grateful for you. You help me have a voice for the kids and for other families faced with PKD.

It was a lot of work, as usual, but this year it was extremely difficult because of the urgency in the situation with Gage. I sense that Gage is a bit better. And by better I mean, he only seems sincerely unhappy about 85% of the time. The other 15% he is nearly enjoyable to be around, except maybe the shifting 5% he is talking about killing himself, or asking to be killed, or talking about how he doesn’t care if he dies.

He had pure joy written over his face while he was around his cousin this weekend. Andrew brings happiness to Gage and that was good to see. They had a good, but sadly short, time together.

The night before the Walk Quinn spent the night with Becca, who is Gage’s donor, Jody’s daughter. Quinn can’t stop talking about the party that Becca had – it was all very exciting for Quinn to be part of a “really big girl party.”

My house is a mess. And Julian is traveling for a couple of days. So absolutely nothing will happen to make the house look better. Or maybe my friend, M will come and help me with that!

Gage has a play therapy appointment today and Quinn has a ceremony at the same time as Gage’s appointment. Guess who will loose out? Poor Quinn. Gage also had an IEP meeting Thursday. Sound be fun, since in part, I think we will be discussing his recent “simple battery” charges. Seriously.

My BFF sent me the most awesome gift (from here) of a bracelet with 12 photos on it (it’s two sided). Just because she loves me and knew I needed a pick me up. And well, she can’t come over and list-make for me and get stuff done, so this is the kind of thing she does. I mean besides talking me off a ledge. Because that’s what friends do. Since I am posting this picture, does this count as my Friday Photo Fun?

I just had to cut THREE awesomes out of that paragraph. A sad example I need to expand my vocabulary.

Friday as I was getting things together for the Walk/Run I got a call from the NIH. Apparently, our family is a genetic researcher’s dream. They’ve just discovered a gene mutation, previously unknown, that has caused the kid’s OMA, PKD and developmental delays. The researchers involved are very excited, or “giddy” as we parents like to say to have this mutant gene identified. When we were there in April, they said if they could find it it would take 1-2 years to locate it. I don’t know much yet, you know, SINCE IT WAS UNKNOWN UNTIL NOW. I can only say that Dr. Wonderful had suspected this all along. If I could tell you how strange it feels for us to have a “known” factor in all of this, then I would. But I simply cannot. I know this doesn’t change what course the kid’s disease progression will take, but there is some comfort in the knowing. I hope to know more this week.

How’s that for a cliffhanger?