After picking up Gage at camp yesterday I was on my way to get Quinn, who had been spending the afternoon with my friend Kathy. I was in so much kidney stone pain I had to call my mom to get Quinn, I had to pull over and have my Dad and sister, Terry rescue me during rush hour traffic on the side of the road. Grandma stayed here until bedtime.

Then today the same Kathy, Mom and Terry and also Leslie came over at various intervals to help me out. And did they ever. Thank you, thank you, thank you.

I wonder if The Village is sick of helping me. I have no idea what I would have done had I not had them to call.

Things were okay until late in the evening (as with most households with small children and what I call the witching hour) when a timeout was called for because of general out of control-ness and screaming. Thirty minutes later and they were better. It was bedtime, which helped a lot. And we talked about our big trip this weekend. So that helped too. Nothing works like a good behavior mod plan and a little bribery.

I just got a speeding ticket on the way to take Gage to camp – a camp he didn’t want to go to this week, but one that he was thrilled to go to when we signed up.

And it appears that I have another kidney stone passing. And did I mention Julian is out of town?

Figures.

There’s a reason Gage’s behavior and Quinn’s whining didn’t bother me this weekend.

Julian took them to his family’s house for the weekend – pre-family reunion. I met up with the family today. I hear things are still shaky on the behavioral front.

But it didn’t bother me a bit. Well…I might feel a little guilty for not feeling bad as Julian and the kids were pulling away. And I think I gave myself up with Julian when I tried to say "I’ll miss you guys." And I couldn’t say it without smiling.

Just over three months ago our family embarked on a journey of kidney transplantation that would change the course of our lives forever. I’d spent the night with Gage at the hospital after his last dialysis treatment and woke early to snuggle up with him. He was nervous so we spent some time talking about everything that morning before the pastors came, before the calls started and before Quinn, Julian and my parents arrived. I’ll always remember him tucked on my lap in my criss-cross, apple-sauce legs. My little, skinny, scared, kidney-challenged boy. 

Gage would get a kidney from a family friend. Jody would change Gage’s life and become a part of our family. I just never knew it was possible to have busting-at-the-seams gratitude for a person every day when I wake up and see my boy smile. Even the smallest of simple pleasures that he now enjoys off of dialysis like milk and pizza mean everything to this mom.

Jody’s gift was remarkably courageous. She will say that it wasn’t – that she was just doing it so Gage could have the chance at a better life. Yes, she’s that amazing. She still can’t understand what all the fuss is about…how people are still telling her that her gift made a difference in how they thought about organ donation and faith and the true nature of giving. Helping one boy. One family.

And even now, with all these challenges, I’m still happy that Gage has a new kidney. Gage is giving me a good heaping share of trouble with his little attitude and that made me cry a lot yesterday. But he and I will work through it. We’ll take our short term plan and we’ll work it until…

Well, until…

Six hours after we left the ER this morning we were going back to the hospital for kidney clinic. Normally they would draw blood but I’d promised Gage I wouldn’t let them. I mean really. That just would have not been right. Not in any way.

I was so tired. Gage was so tired. We had to bully him into taking his meds this morning which made the two of us leaving the house in tears. Which meant we started the morning in arrears. So when the nurse, then doctor a few minutes later asked what issues we needed to discuss, I was weepy. I cried as I talked about Gage’s recent behavior issues that have been completely out of control the last 2-3 weeks. We talked about the steroids he’s on being a possible culprit, we talked about the previous behavior modification program, we talked about the possibility of Gage getting assessed by a psychiatrist (implying the need for some kind of med).

My crying left the doctor leaving to find my social worker so we could address some other options. Because I must tell you there’s nothing more beautiful than a sleep-deprived mother of two chronically ill children who has been having bouts of depression, discussing her child’s behavior issues.

The first option being for us to get back in touch with our own psychologist who helped us with behavior modification (a VM and an email…CHECK!). He’d gone on a trip to finish a research project last October and we just never went back because things were okay. But our situation is different now and calls for a tune-up. We’re also going to have a psych consult for Gage by the psychologist at Children’s Hospital.

So there you have it. Just a normal Thursday around here.

We’re on the way to the ER. Gage asked to go because where his "new kidney is, there is a lot of pain." After a chat with the doctor and the words "possible infection, clots or rejection" hit the air, a tad of panic set in. And well, we’re packing a bag because the doctor said we might be admitted. She’s calling ahead to tell the ER we’re on our way.

It’s nearly 8:30 on a holiday evening.

UPDATE:

It’s 1:36 in the morning and we are back at home.

Good: The ER doc was waiting for us and was crazy delightful. Bad: The ultrasound tech wasn’t called in until we got there and processed and was over an hour away.

Good: Gage was mostly at a 5 pain scale (from a 10 at home) for the ER stay. Bad: He was completely wide awake the entire stay.

Good: He finally let them draw blood after several minutes of negotiation for the butterfly needle instead of an IV needle. Bad: The several minutes of negotiation.

Really, really good: His labs were all normal. His ultrasound was fine and we were sent home at 1:00am. They think it could be a GI thing. Really, really bad: We have transplant clinic back at Children’s Hospital and must get up at 6:45am to be there on time.

Circa 2005

The PKD Foundation was featured as a non-profit in a hard cover coffee table book called World Champions and our family was asked to be the feature family for the page on the PKD Foundation. Here is a link on the Foundation’s site that describes how you can help. The basic information is…

"Between June 1, 2007 and September 30, 2007, more than 25% from each gross sale is given to the charities, broken down as follows: 5% goes to the charity of your choice (from the ones featured in the book), an additional 20% is reserved for the charity with the most votes, and yet an additional 2 cents is donated to each charity in the book, in an effort to give each charity your “Two Cents.”

The link from on the PKD Foundation’s web site will forward you to the books home page or you can go here, directly to the site that is offering the book. On there you can click "VOTE" in the upper right corner (that is FREE) and choose the PKD Foundation as the charity of choice. You can only vote once. Please vote and ask your friends and families to vote. Of course, if you are so inclined to purchase the book, that equals 100 votes, and that would be great too. But for sure go and vote!