The place where dreams come true and parents are tired.

After the convention finished up on Sunday we were on our way to see the Disney Magic first hand. The special needs pass (my that kidney disease is handy) was instrumental because Gage isn’t walking long distances (without pain) these days and the kids are still fragile with dehydration so the pass allowed us to not linger in long lines in the heat. I bought a sit and ride stroller (to haul both kids around) cheaply at a consignment store and it proved to be very helpful. And while Julian didn’t "like seeing Gage in a stroller" it didn’t bother me a bit or Gage for that matter. The pass allowed them to ride the rides they wanted to with no waiting so we were able to make it through two parks in two days.

During the middle of this trip to the park pictured here, my camera decided not to take pictures that were clear and colorful anymore. I’m very sad to report all the pictures of the kids with characters are ruined.

We are glad to be home from vacation so we can get some rest. That Mickey can keep a parent on their toes!

Gage had an appointment this morning (after a long traveling day coming home from the PKD Convention) at transplant clinic. Lots to report and then some…

• Gage’s gently used kidney transplant is 3 months young yesterday. Happy Kidneyversary Jody. We love you and your kidney. The kidney is working beautifully but you always believed it would.
• Gage has a biopsy scheduled for July 17th — standard 3 month mark here. They super sedate him in the office and use a needle to get a nip of the kidney to really make sure there is no rejection. They don’t expect it since Gage’s kidney function labs haven’t moved at all from completely normal but we’ll have confirmation and that will be good. Did you know that not every kidney transplant kid in the country has to go through a 3 month biopsy? Learned that this weekend. I’m not so sure about the sedation because you know, sedation meds do the OPPOSITE of what they are supposed to do on Gage. I told the nurse that and she said "oh, not this one!" Okay.
• Gage is remaining steady at 55 lbs and has for about 5 weeks. His nutritionist is thrilled he’s stable and happy with his progress nutritionally.
• Gage is now 2.5 inches taller than he was when he started dialysis last September. This is a huge victory. He’s now not below the 5th percentile for his age for weight and height, he’s somewhere around 13%. And that could mean it could continue in this nice direction. And if it does, we may not need to put him on growth hormones at the post transplant 1 year mark. We have a ways to go, but it is an incredibly great start.
• They reduced a BP med so we’re only having to dose it in the morning. We’re all happy about that. Hope his BP maintains. We’ll be doing some checks and double checks here at home to see how it goes.
• I am working on a lot of posts. I did them over my time away, but my computer was wonky, so there you go. No posting while away.
• I got to take a picture of Gage and one of his surgeons – the one who put the kidney in – and I’m thrilled to have it.
• I also need to address the emotions I am going through. They are still there. I’m finding my way. And realizing that people still don’t want to hear the nitty gritty parts about going through and living with a transplant (for us), but I’m going to tell them anyway.

More later.

But my boy! He’s growing!

I present you the cutest picture ever of Quinn’s BFF Mary Clara. Or as Quinn says very enthuisatically "Mary Clara BEARA!"

"Gage, can you tell that you feel better since you got your new kidney?"

"No" (big grin…pause) "YES!"

"But I still miss dialysis."

The child ain’t right.

Upon opening a package from my friend Ruth that included a Scooby shirt, a ballet cosutume and several kids music CDs, Gage, when he saw Kidz Bop 5 said "Mommy, I’ve been wanting that exact thing!"

Do you want to know how many times I have heard the CD? At least 10 a day. He wants me to load them on his Shuffle.

Thanks Ruth. No really. Thanks.

When we were born, you made us feel wanted.

And loved.

You make us laugh and smile.

When we are with you we are happy.

You praise us. You encourage us. You accept us.

You are present for the good and the bad.

We’re on our way to being happy adults too.

We love that you spend time with us. We love that you want us to be happy. But mostly we love that you love us.

Just as we are.

We’re crazy. We’re silly. We’re over-the-top. For you.

We’re so lucky you want us to experience life.

Thank you Daddy.

We love the beach trips. Thank you Daddy.

Thanks for loving Mommy too. That makes us feel good.

Thanks for letting us have a dog. We love Lucy.

We know we make you crazy sometimes. But we know you love us anyway.

Thank you for providing for us.

Your desire to give us what we need it like a warm blanket that surrounds us.

Thank you Daddy.

We know you miss your Daddy…because we know how we feel about you and not having you here would make us sad. So we know that Pop not being here makes you sad. But we also know that he is partly the reason you are the way you are and we love that Pop helped make you for us.

So really. Pop lives on in you.

You were a good son to Pop, especially when he needed you most. Thank you for that example.

You are fun to be around. No matter where we are. Or what we are doing.

You sure go out of your way for us. And we usually have fun.

We love you. Oh yes we do.

Thank you Daddy. We love you.

Gage & Quinn

This was written in a 20 page book of photos of our family.

Summer fun with cardboard. They are awfully happy. Who needs TV, computer games and the pool? Well, wait. We need the pool.* Can’t we all agree that the cap is the ticket to eternal cuteness? Forever captured on a digital photo.

*Not my own pool silly! A great neighborhood pool that allows cocktails, but sadly does not open until 11:00am.

I will set aside Gage’s behavior issues (seeming always to be present) for just a moment to say that he is learning.

He’s feeling well enough to concentrate on learning. He’s reading so much better than he was before transplant it’s amazing. I think the reason he is doing so much better at learning is that he feels well enough that he’s not getting as frustrated as easily as he used to while he was trying to focus. It’s that sunnier disposition I was mentioning recently.

He’s had such a big year for his little 8 year old life, but he has dealt with it all better than I ever expected he would. One of the best parts of being his mom right now is seeing all that good kidney function go to good use. Playing, learning, eating and living well.

Yes. Living well.

I am smack in the middle of some big emotions relating to the transplant and raising sick kids. I started a post, then had some questions about where it was going, so I sent it to Dawn over at This Woman’s Work. She is pushing me to write more in depth about my feelings surrounding our recent experience. So that is what I am doing.

To my family and BFF and people who love me in real life – The Village – I beg you: DO NOT FREAK OUT. I will be okay but for now if I seem different. A little off. That is why. And for the record…I believe it is completely normal to be going through this although I can’t seem to find anyone else who has been through a similar experience talking about it openly.

But I am sad. And it is real. And I’m working through it.

52 weeks makes a difference, don’t you think?

Last year this week we found out that Gage’s kidney function had taken a dangerously large step towards acute renal function and that we would need to come in to our nephrologist’s office to discuss the next steps of transplant evaluation. We’d been camping and we were getting ready for the PKD Convention in DC. Timely, I know. We scheduled the appointment for the end of June and then attended the convention sessions on dialysis, transplant mildly freaked out the entire three days.

Little did we know what the year would bring. It’s no secret that we didn’t plan on Gage needing dialysis, but we’d attended that session at the convention with great interest and were able to ask a lot of questions about what to expect. We went through the summer as planned and here is Gage at the beach. He looks happy and tan, but he does look sick.

Fast forward to transplant and release from the hospital after having had his 5th Popsicle in one day. And then 7 weeks post transplant. What a different a new kidney makes. No need to note his self cut hair on that last picture, m’kay?