Today it is two weeks since Gage’s x-rays were done as a base line confirmation of the need for growth hormones and from my perspective we’re not any closer to getting Gage started on them. Let me remind you that he can only be on growth hormone until transplant and then he cannot take it and he probably won’t have any growth as a result of healthy kidney function until 1 year post transplant.

Dr. Caring’s nurse, The Best Nephrology Nurse In The World (TM)  left a voice mail for me last week while I was enjoying a particularly good frozen Margarita at the beach that things were in motion but that it will take them a while because they (the transplant team at Children’s) needed to get all of Gage’s records copied and needed to work through insurance approvals. Oh no, she didn’t just say insurance approvals, right? Because I have a feeling this could be a while. Our insurance (at a lovely $1700/month for the mutant family of four) while adequate is not known in the real world to process things quickly. And I’m guessing the form that they received from Children’s included a line item for a Kidney Transplant: $75,000-150,000. I wonder how many departments that piece of paper will see before approval.

The timing could not have been better to run out of a med: as luck would have it I had a real excuse to call TBNNITW to get a refill! So I left her a nice long, rambling message and I remember hearing myself say "I am so glad I had this excuse to call you…because I really want to know what to expect…am I supposed to be doing anything…labs, calling anyone for appointments…blah, blah, blah." I think her phone beeped for me to shut up. I wonder if she isn’t thinking "it’s going to be a long year until transplant of that Gage."

There’s hardly anything more comforting during the summer before The Year of the Transplant than watching your kids, their cousin, and The World’s Best Babysitter, Who Everyone With Kids Shall Be Jealous and Envious is Ours, Ours, Ours, having fun on the beach. During this beach trip as I watched all the kids throw sand, look for shells, ride the waves on boogie boards, swim in the pool, bike, eat ice cream, sleep well and eat Flavo’ices I was, well…comforted.

I was thinking that if The Year of The Transplant is really bad, how simply amazing it will be to look back at this time and remember a boy, who my sister – the nurse, says "has that renal failure look" playing in the sand until the sun went down with the enthusiasm of a healthy boy who isn’t in renal failure.

It occurred to me over vacation that Gage could eat completely out of a convenience food store. You know, the kind that sell gas and lottery tickets, and slurpees and single cans of beer. Many of the items he will eat are orange in color and they are of the processed variety. I’m not proud of this fact. And it all drives me crazy. Enter single can of beer purchase.

I’d asked Dr. Caring if we should be seeing a nutritionist, but she essentially said "why bother" as we really aren’t trying to preserve his function at this point. We’re just trying to keep him off dialysis and hoping that the function he has will last until next May.

Gage’s eating issues are probably a combination of renal failure causing lack of an appetite and his food texture sensitivity issues. He’s a complicated little boy. Except with food. Orange food.

Sibling love. 

Gage and Quinn like each other most of the time. Sometimes they tolerate each other, but most times they are friendly, even helpful with each other. Occasionally – not often – I will be able to capture a picture of sibling love. Here is one of those times.

A shout out to my older, non-grandmaish, Rugby Guru, definitely not Rugby Grandma, sister Tammy on the anniversary of her birth. Happy, Happy Birthday.  We love you very, very much. Thank you for always being a fun Auntie. You are a crazy girl who adds a lot to the world and the world is a better place with you in it…we love that you are a teacher, and we’re extremely proud that you help kids find their way. That’s powerful and lovely. Just like you.

We love the beach. We are on vacation and we are watching the kids jump in and out of the "Big Water" and they are having fun. They are in the pool a lot and they are very tan and they are enjoying ice cream and eating cereal for dinner. They are very tired at the end of the day and sleeping like logs. They are having full days of beachy fun.

I’ve been thinking a lot about the beach trip next year. Because, if you have been paying attention, we might have us a transplant next summer. Or maybe it will be a bit before…or a lot before. My mind has been going to some dark places too. The scary ones I need to process about this transplant. Maybe because the beach is a quiet place I’m able to process some of the not so wonderful things about having a new kidney. You know, the media makes a kidney transplant look all glamorous and easy, but I’m here to tell you it is not. The doctors have said it is exchanging one set of problems for another.

Must go and look at the dolphins frolicking.

I’m so late on my annual Post-PKD Conference entry that I will enter some really cute DC pictures to distract you.

These two. They’re trouble together I tell you. Genetic trouble I mean.  Luke and Quinn. Both have ARPKD. I remember making Dr. Wonderful laugh when I asked her would it would mean if Quinn and Luke fell in love one day and married. "Ahh…you don’t want that to happen."  But goodness they are a beautiful couple. On this morning Luke asked to sit with us instead of his own family. Who could blame him well with all that charm of the girl with the huge bowl of Fruit Loops. 

Gage actually has a creative eye. I often give him the very expensive digital camera. I’ve had to add memory to my computer to help keep up with his artistic shots. Here’s another one…at Arlington.

Strong Girls Rock! This is Kate with Quinn. Kate came with us to DC to help with the kids while we were in sessions. She started watching the kids last summer when she moved to here. My sister, Tammy, who is a grandma of women’s rugby* coached Kate and said "you will love her!" and "she will be great with the kids!" What my sister didn’t tell me is that Kate would become a part of the family.  She’s not a babysitter. Or a Nanny. She’s so much more than a Nanny. She’s cool. She plays rugby and just got on the Women’s National Team. We could not be prouder of her.  She travels well that Kate. Even when she is stuck overnight in the airport with Julian and the kids and not one blanket to be found when the airline cancels an 11pm flight at 2am and then puts you on a 6am flight.  She actually wears the kids out, not the other way around like us old people. We love her.

* Apparently, Tammy does not like the term "grandma" when speaking about her. And also, her boyfriend, who she calls "the best boyfriend ever!" (TM) – had something to say about it as well. How about "my sister, who knows all things Rugby…and has for many years."

We’ve heard that our transplant referral paperwork is being hand-delivered to the transplant team as we speak. As in TODAY. It’s weird how that feels like a milestone somehow and not necessarily a bad milestone. But not good either. Even though Dr. Caring insists this is a good thing.

We’ve also heard that the transplant team wants to handle the ins and outs of getting Gage started on growth hormones. We’re to take him to get x-rays of his hands, knees and hips for a baseline of growth.

And just so you know Dr. Google is not being very cooperative today. I’m trying to learn the side effects of growth hormones on children with acute renal failure and reactions with other medications. Too specific maybe? Ya think?

As a side note, as I was ordering refills on meds today and after rambling off the 6th refill number the pharmacy clerk said: "just how many more do you have?"  Listen up clerk lady: I don’t like ordering them any more than you like writing them down for the pharmacist to fill. So shut up. And there are 3 more so just write them down. And deliver them tonight. Yeah, thanks.

We’re a pitiful excuse for celebrating Americans.

Sure, Julian did his obligatory 10K run, ate a waffle, then took a nap. And I took the kids to the neighborhood parade. And yes, we spent 6 hours at the neighborhood pool. Then cooked out steaks on the grill with another couple. But when it came time to venture out for the crowning glory of July 4th celebrations around the country – you know, fireworks? Can’t say we did that. You know what the kids got? Two dollar sparklers before sundown and they were in bed by 8:00.

Don’t ask me why they have to goof around in most pictures. Maybe it’s to DRIVE ME CRAZY (short trip). I know you just saw this dress on Quinn. But work with me, okay?

This one isn’t goofy. Post sparklers and pre-dancing in the front yard. Yup. They’re cute alright. When they aren’t making me tired.

And the fireworks around our fine city? Canceled. Due to thunderstorms that came on quick. People running to their cars for shelter. Our laziness paid off for us for once, huh?