I have a lot to say about where we are as a family adjusting to life post transplant for Gage but I am having a serious writing block. Work is busy. Kids are out of school. I’m not myself for some reason. I guess you could say I’m blue. This transplant has impacted me more than I thought it would and I’m still processing a lot of feelings. This is a happy problem to have, but I am struggling.

It’s not just skipping through the wild flowers, you know?

Gage’s gently used kidney is working great. He’s doing well with meds, blood draws, doctor visits and we’re thrilled that he has good energy these days. But he is in extreme pain. In his legs – it is muscle, joint, bone pain – we’re not sure. The transplant team is stumped. They have never seen this particular symptom in any other post transplant ped patient (of course) so they are not sure what to do. Spoke with the pharmacist for drug side effects? Check. Ankle x-rays? Check! Hip x-rays the following week? Check! All doctors and nurses watching Gage walk and run down the hall with quizzical faces? Check! Check! And check!

It was ever so much more noticeable while we camped over the weekend. Normally Gage would have hiked it up all weekend, leading the way. Not so this trip. Only one hike. And part of it Quinn was able to keep up with him. This is sad people! Because that Quinn is the slowest walker on the planet. He’s now almost on around the clock Tylenol Meltaways (I bow down to the person that invented those because Gage can never have Motrin again) for the pain for a little relief and frequent ice packs. This hasn’t slowed down him wanting to play but he shuffles his feet now like an old man and if he tries to run, his arms are moving forward and backward like a speed walker in a race.

After only being able to set an appointment for July 2 with his orthopedist (yes, we have one of those too) I called his nurse and pulled the kidney card. Left a 5 minute message about Gage’s pain, the fact that the transplant team has run out of ideas of what it could be and that Gage really needs to be seen before one month from now. Big points for the nurse who called back within 5 minutes (the amount of time it took her to listen to my long message) and set an appointment up for Monday at 4:15. It will cut into his crafting time at Clay Play art camp, but we’ll deal.

I told Julian that Gage probably has a side effect from one of the drugs that happens in 1 in 2 million people, a side effect that no one is considering at all, because "that never happens" — we’re lucky like that.

Speaking of lucky. We, as in the couple we, are off to a weekend at Four Seasons to celebrate our anniversary. Lucky 13. It’s been in the planning for months. And it’s luxurious. And we don’t feel guilty at all. We are planning on spending time remembering why we liked each other in the first place. And I imagine we’ll discuss how it is we came through all of this more deeply committed to each other, despite the obvious challenges. Because we are together in this thing called life. We’ll connect again, because your child’s transplant can get in the way of that I tell you. And we’ll be having glamorous dinners of five-star dining, where the chef will greet us and our server will be over-tipped. We’ll have room service. And massages! And well, a lot of mad, passionate sleep.

What are your plans for the weekend?

Finally. My April and May Getting Your Craft On challenges proved difficult to fit in. You have no idea how your child’s kidney transplant can get in the way of your craftiness.

April – Aprons. May – Flowers. April brought flower fabric from a thrift store that became an apron for my friend Leslie. May brought flower clutches for teacher and therapist gifts and my friend Tina’s birthday (which happened to be on Gage’s transplant day)! I made 9 clutches for some pretty special people.

Bring on June!

On the way to the ER tonight with Gage. Nothing kidney related. Just back luck, a swing in the eye, and a "black spot in the middle of my eye, where I can’t see anything."

Yeah.

Update: When Gage returned from Cub Scouts with Grandpa I called his eye doctor and got a resident on call. She had wanted me to bring him in to the ER but he was tired and wanted to go to bed so he was already upstairs. She said if he got up early and was still seeing a "black spot" to call her and she would meet us at the office early, before the 8:30 opening time. After about 15 minutes I went to check on him and he was awake and started crying. That is when I decided to take him in. Julian was at his nephew’s graduation so I called our always-there friend Kathy, who was at our house in 20 minutes. Before I left I called the doctor’s answering service so they could let her know we were on the way to the ER – in other words, don’t go to bed, because that on-call beeper you carry will go off.

There was an exam by the ER doc, with drops in the eye, by the way. And for the record, Gage does not like eye drops. It was very dramatic and involved three of us holding him down. He was not a happy boy. He called the doctor a "Knuckle Headed Butt" who I think said "sometimes I am." The second time we held him he hit the ER doctor’s arm. That’s nice, isn’t it? In the eye doctor on call’s wisdom, she called the ER to find out if Gage had arrived (an hour after we were there) and just came on over. Her doing that probably saved a couple of hours of our time last night. As it was we got home about 12:45am.

Gage’s eye has a significant scratch on the surface. The "black spot" comment worried her so she did a full exam to check the cornea and retina. All are well. As fate would have it Gage has an eye exam scheduled next Thursday so we’re all set for a follow-up visit without the drama of setting an appointment. Lucky us.

I will say that when I called my friend Carol, she did point out that there was good news and bad news. Bad: we were on the way to the hospital again. Good: he got hurt doing a regular, healthy kid thing like running around on a playground.

I’m sure I’ll agree when I get some sleep.

I just got back from Gage’s award ceremony for his grade at his school. In years past (2 years of Kindergarten) it was always bitter sweet because although he had accomplished a lot for him, those years were hard (or so I thought). It had bothered me in the past that Gage didn’t get any awards for things like reading, citizenship, and honor roll and just had his name read out loud for all to hear.

This year? It doesn’t bother me a bit. He’s alive. While him being promoted to 2nd grade without any thought if he should be held back is wonderful, it’s secondary to him surviving this year. Literally. Surviving.

Incidentally they did read a few awards after calling his name and while that makes me proud, it doesn’t have any bearing on why the tears started flowing. It was a hard year for him and the fact that he survived 5 surgeries, kidney failure and emergency dialysis, roughly 76 dialysis treatments, loads of med changes including a growth hormone, and kept his head above water educationally is astonishing to me.

I cried because I’m so grateful he is alive to ponder 2nd grade. I cried about the incredible gift Jody has given our family. Given my boy. Life. Normalcy, within our standards.

My boy is a second grader with a new (gently used) kidney. It’s crazy. And beautiful.

Dear (School) Community,

We want to thank you all for the support for our family before, during and after Gage’s recent kidney transplant.

We’re humbled by your generosity with cards, emails, food, gifts and encouragement (via marquee even!). Gage was able to continue to feel like a part of the school and his class and we believe that helped with his recovery.

When we selected this school and moved to this neighborhood 3 years ago, we had no idea of the true nature of the positive impact of that decision. And well, Gage’s day of returning to school to a sea of yellow nearly brings us to tears remembering the sheer beauty of the gesture.

Many, many people say that any sense of community no longer lives in 2007. To that we say they have not seen the support we’ve been given, then have not seen our child supported by his classmates and their families, they have not seen total strangers reach out to a family in crisis and they have not seen this school in action. We thank you for your care and concern. We’re forever changed because of your kindness.

Julia & Julian, Gage’s proud, lucky parents.

PS – We’re happy to report that Gage’s gently used kidney is working great! It’s the first time in his life that he has felt well. We’re extremely grateful.

It’s all about Quinn.

She had her ballet recital last night. The company that teaches is doing it after school one day a week. Probably not every company would agree to teach at a special needs school, but we parents sure appreciate that they have.

She was so proud. And so were we.

If I can get permission from Quinn’s BFF’s Mom, I’ll post the world’s cutest BFF picture of the week.

I have this friend that I am not sure wants to be officially outed here so I’ll change the names to protect the mutant (genetically challenged in the gene mutation category).

But. She is the mother of two children with ARPKD. She and her family trekked to the NIH to participate in an study on ARPKD. Her story is a lot like ours. She had a newborn diagnosed with ARPKD at birth and had their older child tested. He was diagnosed at age 6 with ARPKD too. They were devastated as you might imagine. As I know personally because we were as well. They were the first family* we knew that has two living children with the disease and it’s been a special connection for us because we both have the unique situation of ARPKD X2.

Today she sends me a note about being mutant, what, with all that disease talk she went through at the NIH. So she says…"really only other moms of mutants can possibly understand. So for us MOM means a few things!!"

You get that right? Moms Of Mutants.

Thanks you other MOM. I appreciate the laugh. If I have to be in this special club, I’m glad you are here with me.

*And well, since she’s commented, I can tell you there’s another family with two ARPKD kids (cute ones too!)! Hi Sheri!

Since Gage’s transplant we’ve been in hyper-parent mode (I know you wouldn’t know that by the med mix up) to do everything just right in relation to his well-being. I think (beside the Prograf debacle) we’ve been doing okay.

Poor Quinn’s been ignored a bit on the medical front. She had her annual testing in December for ultrasound, echo, and labs and apparently a repeated lab at her normal interval of 3 months somewhere around the month of February or early March.

I have no memory of it having ever occurred.

Julian states that Grandma took her for labs and Grandma agrees. And I know somewhere in my office of now 15" high medical paperwork sits lab results from that visit. Maybe.

It’s interesting being pre and post transplant with the kids. Before transplant I don’t quite remember what I was expecting but now that I’m here I can say there is definitely a shift to a higher level of anxiety. We knew kidney failure. We could do that with some certainty of what the outcome would be. Failing kidneys = Dialysis.

While we have to believe that all will go well with Gage’s new found 100% kidney function for a long time we still worry. And we still worry for Quinn and her struggles; educationally, developmentally, and kidney function (or lack thereof) and inevitable kidney transplant. I can’t imagine my feelings around worry where the kids are concerned being any different than they are today.

The meds are a constant reminder of what is in the present for Gage and what is in the future for Quinn. Odds are that transplants will go well for both Gage and Quinn. But I do often wonder if we are using up our good kidney karma on Gage and if Quinn will suffer because of it. At some point, will our odds run out? (I mean besides the odds of having your only two children born with a rare recessive disease and vision disorder.)

PKD has shaped our lives as parents, individuals and as a family. We live in a constant state of low-grade worry. Is there any relief from the worry as parents? Not really. Every single day we wonder what the future holds for us as a family because of the affects of PKD. We realize everyone’s futures are uncertain, but it’s different for us because we are reminded constantly there is a reason for the uncertainty. Their very lives are fragile.

All the more reason to enjoy each day with them.

This is a picture of our family many years ago (sorry Pat, nothing personal, but someone didn’t know how to center a photo). And here’s my mom in all her glory with the most beautiful blond hair I had ever seen in my life.

Thanks Mom. For everything you did to help me to learn and grow up to be a decent human being. Thank you for showing me in reality that sometimes you just have to get through something. To survive it. And while, sure, it’s best to hold your head up and say it won’t crush you, it’s also okay to say "this sucks!" and keep going. And if my Momma can say that and still appreciate life and the beauty in it, I suppose I can too.

Thank you Mom and Happy Mother’s Day. And if you are a mother (birth, bio, adoptive, foster, still trying, pregnant, step, or a woman who has been a mother figure) I hope your day is good. I hope you enjoy today especially. I hope you see a movie, take a nap, enjoy a walk, or get to do whatever it is that makes you happy. You deserve it this day and every other day too.

Sunday night Gage cuts his hair. It wasn’t cut a lot, just a little reverse Mohawk. Apparently he decided that Quinn also needed a haircut.

Note the pony tail at the top of her head was left untouched. The two sides are cut just above the ear. Yes. He cut the sides of her hair short. In this photo her left side looks like there isn’t any hair. You know why? There isn’t. I know this is my fault. I laughed with my friend Beth that this had never happened to us after she told me about her daughter Annie Mac’s scissor wielding day.

And then there’s the AFTER photo:

And the before the Gage haircut photo…