But it’s not just the kidneys around here. We’ve got mounds of paperwork, new doctor appointments, old doctor appointments, behavior mod to implement and well, we then have living with Gage, which has it’s own set of newness (not always good newness) everyday.

And then it doesn’t. It gets old, too.

- We found a group therapy situation for Gage that we’re going to try. It’s for boys, 3 hours a day, for 10 days. 6 boys. “Group Camp” we’re calling it. It’s to work with social interaction, boundaries, expression of needs in play/communication. We just decided we needed to mix it up a bit. The cost is $860 for the session and it is out-of-pocket.

- Gage has been doing better since school is out. For Gage better means he’s just Less Gage Amped Up. He’s still a challenge, but he’s less of a challenge. He was downright nice for my birthday even. He gave me a card, too, that didn’t involve a picture of him on  a train running me over.

- I realized I never really backtracked and talked about Gage’s weighted blanket. I bought one from www.beanblanket.com and he loves it. I paid, with shipping, $100. It’s like the medium size, so less than a twin bed but it fits him perfectly and stays on him all night. I am sure in about a year it won’t. This blanket weighs 10lbs and goes where Gage sleeps. Family or boy scout camping? Yup. Traveling to see the nephew in Nashvegas? There too. A reader (JM can I out  you?) pointed me in the direction of it this year because of Gage’s sleeping troubles and I’m so grateful. He does sleep noticeably better. And in case you think we are lacking wildly the discipline of a good sleeping schedule, you’d be wrong. We’re all about the routine around here. Same time, same routine, same toothbrush, same prayer. The blanket helps settle him. Actually, we should all have one.

- Gage still is hanging on to Boy Scouts. He’s not too thrilled about many things these days, but doesn’t fight it. Last week for the most part he played alone in the corner of the yard when 30 other kids were running around but he didn’t seem unhappy. I think the alone playing is many things, self confidence, too much stimulation and that was his self soothing, one way to stay out of trouble.

- Gage is struggling with piano. Not the playing part but the going to lessons and practicing part. Normal or not? I sense many kids don’t want to practice, but we’re seeing meltdowns because he is frustrated when he makes a mistake. We can’t seem to help him understand that practicing is all about making the mistakes until you learn. Last night I found the three piano recitals he’d done and he was impressed and proud of what he could play now vs. Mary Had a Little Lamb on the first recital a year ago. So sad the level of his low self worth. Hearth breaking.

- We love Gage’s rock climbing instructor. She’s a trained Outward Bound and deals with special needs kids, apparently particularly boys with low self-esteem. Gage is quite a good rock climber and without our prompting she told him the other day that during camp this summer she’s going to need help with the other kids because he knows a lot more then them about tying the knots. Did I mention he’s a little like Rain Man with knots? We just bought him his very own harness (on sale) and we’re about to get him climbing shoes.

- Gage’s kidney function is great. In our desperation a couple of weeks ago, we had the thought (and one of his teachers asked about it) that even his kidney might be failing. It’s not, much to our pleasure. Because really, that would be too much. Numbers are stable, thank God.

- Because all of the immunosuppressants he is on his body can’t fight warts and one of his knees is covered with them. We’d been going almost monthly to the dermatologist to fight them with freezing but about a month ago he kind of lost it in the office and we had to hold him down to do the procedure (hate, hate it) through screams, tears, protests, so I asked the doctor (in front of Gage) if we could fight it topically for a while to keep them in check and she researched a new topical drug (she’s always concerned about body absorption because of the new kidney) and she found one that we had to special order – for $70 for one small syringe – and much to my delight it is working. Three treatments and they are much better. I think it we keep it up this may actually work. This is one small victory for all of us – it shows that when possible, he has a voice about treatment and that as his mom, I’ll keep looking for new ways for treatments as his advocate.

- We’d recently upped his anti-depressant. I have no idea if it is helping or if the end of school had an impact, or his relief at passing 3rd grade is the factor, but he seems a little bit better. Because there is so much with Gage (mental, physical, developmental) it’s always hard to judge the impact of behavior mod or meds.

My boy is complicated. But he has a great smile (when he occasionally does it) and he’s smart and I love him. One day I hope we’ll see the real Gage again. Because it’s been a very long time.

And I miss him.