I’d assumed Jody’s and Gage’s 27 month kidneyversary was recognized on blog because I wrote a post before I went to the PKD Convention and I set it up to publish while I was gone – on the 27th of course. Sometime while I was gone I thought I saw the post or a comment come through and now I don’t see it. So did I delete it? Did the kidney gods not like me celebrating so much by removing the post entirely? And did those same gods make Gage’s creatintine rise just a little bit? You know, to put me in my place?

I have no idea. But I did want to thank Jody for her kidney. Gage says he doesn’t feel it anymore (for about a year he said it felt strange to him) which I see as a good sign.

Thanks again for your unselfishness and act of courage to help my son. Thanks for helping him live off of a machine (cause that really sucked) and for giving him energy and yellow pee and an appetite!

Love you and that rocking kidney!

Quinnlin’s swimming season is over! Five swim meets in which she did fabulous, but most astonishing are the friendships she developed and how she wanted to right there in the middle of things! With typically developed kids! It speaks to how much her Village surrounded her with opportunity and encouragement (mingling and opening up a bit, and speaking her mind for starters) to branch out more.

Her vision disorder, unsteady body and weak legs have always held her back from getting into the action because she felt so scared all the time at which the speed other kids moved around her. Early on she learned the best way to stay safe was to get out of the way, except that caused her to be too far out of the way and often times this excluded her from life experiences.

But being on swim team this year was different. She was just a regular little girl on a neighborhood swim team enjoying what so many other girls and their parents take for granted.

I’m here in Chicago at the PKD Foundation’s training and Convention. I get to be with friends that I have developed over the years; special, special friendships. It is so fantastic to be understood without saying a word.

I’ll be forever grateful for the opportunity to be among these people and to help serve with them. Being with people affected by and with PKD is always a moving experience for me; one that keeps me motivated for a long time.

I get to celebrate the victories of life and the sadness of fear with people who don’t need an explanation of why. My close friends here, especially, allow me the chance to scoff at the ridiculousness of my life. I can laugh and I can cry freely without the fear of making other people uncomfortable. It’s a gift they give me each year and one of the reasons I come back.

I’m so thankful for Julian recognizing that I belong here, too. Because without his support I could not do the work of the Foundation.  I’m thankful, too, for the many people in the Village (including my sister Tammy who just cleaned my house) for helping J take care of the babes.

I can only express my thanks in going back recharged to keep fighting. To end PKD, to help my kids and Julian live a better life and  to be a better citizen to the world around me.

And I get to see my favorite doctors. Don’t tell Julian but my crush doctor is here. And I can’t wait to see her.

Today is a good day.

Gage had a horrible day. The babysitter said that in two years, she hadn’t had such a bad day with him. Timeouts barely made a dent and just seemed to fuel him on.

By the time I made it home, he was in full performance bad attitude. Some of his behaviors alone weren’t anything out of the usual (sad to say). It was altogether the behaviors that posed the real problem. Disrespectful, destructive, out of control.

The next few hours that ensued were nothing short of a disaster from all parties (well, except Quinn, who really was an innocent bystander). Timeouts, his yelling, our raised voices. It was ugly. We talked about the reasons why he might be feeling badly and there was a lot of crying with half answered questions.

At 8pm when I went to get meds ready I realized a bad mistake. Gage took his night meds during the morning. That didn’t impact his anti-rejection drugs, but it did impact his behavioral (concerta) and his antidepressant (zoloft) med, plus he took melatonin, which helped him be calm during the morning hours with the sitter.

Julian was upset and had to step outside. Tears were shed. I went upstairs to let Gage know why he was so out of control. He was in bed crying uncontrollably. I told him what happened and asked him to come to me and we would cry together. Because it was a bad day. And while he is responsible for his actions, we knew why he felt out of control. That daddy felt terrible about him not having the right meds, but we’re human and we make mistakes. But as a family we would get through it and tomorrow will be better. He let me comfort him by holding him while he was crying and I kissed his head. Which he never lets me do. So I guess if there is a silver lining…

“Tomorrow will be better Gage, I promise. That is the good news about tomorrow, it will be different and can be better.”

“No it won’t.”

“Yes it will. Because you will have the right meds and they help you. But you know you have to tell me when you feel out of control like that again, okay?”

“Why did daddy mess up my meds?”

“Well, sometimes we make mistakes. We’re human. All we can do is try to make it right with the people involved, like you and Quinn. Both of you had a bad day, you know.”

And then we cried a little more and then Gage and Quinn saw Julian cry too, and it was a cryingfest that left Quinn wondeirng what the hell happened to her family.

So that is how we moved on from today. We cried and then we laughed a little bit, too, about how adults make mistakes too but how we need to own up to them and tell everyone involved we’re sorry. Gage let me say a little prayer with him because he was having a hard time letting today go, saying “I can’t stop thinking about today to so I can go to sleep.” So I prayed for him to only think about fun things like trees and poptarts and fixing things and taking them apart and of bottle caps. And he let me hold his hand the whole time.

And then we will wake up tomorrow ready for the new day.

Happy Father’s Day to fathers everywhere, including my own father, but most especially Julian.

I am so extremely lucky to have met him, and I’m lucky to be with him as we raise these kids. I don’t know how it would be possible to do this exact same life with these kids without him. (I know, if I wasn’t with him I wouldn’t have these kids – but you know what I mean!)

Circa  Nov. 2002

Remember I wrote about Gage’s destructive side? Yeah, so it included his baby clothes. Every so often Gage and Quinn will open their memory boxes and dig through them to look at how small they were or what baby bottle they drank from and on this fun day Gage decided to put his baby clothes (an outfit, a hat and a t-shirt) on his favorite animals.

Except you know, one of his favs has a tail. And strangely enough, his baby pants from his sweet baby outfit did NOT have a hole in it for a tail. So my ingenious son decided to make it custom. Oh, how he can be charming and destructive at exactly the same time. Dawn thought it was charming too.

Sometimes it just feels better to have someone in the kind of boat you are in, you know? Another mom to a child with ARPKD sent me this note and it made me laugh:

I am so jealous that {my child} can’t be on the no steroid protocol. Too late for us. What a thing to be jealous of! Is that against one of the 10 Commandments? Thou Shalt Not Covet Thy Neighbor’s Transplant Protocol.

If she will let me I will give her proper credit, until then, I’ll take credit!

In the last year I met a brilliant nephrologist, with a great bedside manner to boot, through the PKD Foundation. At the time he had just joined the facility that will do Cheryl’s surgery as well as pediatric transplants at Children’s. He came to the facility with experience in research for new drug therapies along with transplantation on adults and kids and a bunch of other credentials.

I heard him speak at a local PKD Foundation meeting  about the research available on a no steroid protocol. As with many new ways to handle advancements in treatment for transplant after care it takes a while for protocol changes to happen with kids. Gage wasn’t able to be a recipient of a no steroid protocol (drats!) even though other centers around the country had gone that route successfully (ask my friend Rachel about her Bryce) for a while.

But it has happened. There is now apparently a no steroid protocol for kids and I think Quinn will be able to be one of the first kids on it at our hospital. How awesome is that?

While I’ve been conversing by email with this doctor (BTW, he freely handed me his card that day we met and said if there was anything he could do…) about Quinn’s impending transplant. When I mentioned to him that I was interested in Quinn being on the new protocol (and Gage reducing steroids because I’m certain they don’t help my boy’s unique propensity of aggression and impulsivity)  they hadn’t yet begun it but he was thinking that it would be soon, and here it is.

I emailed him a flippant comment about how I am always in the face of the transplant team and I hoped they didn’t flinch when he mentioned my name, this is what he said back to me…

“Not at all. They recognize you as a passionate and well informed mother for whom they have great respect.”

That was extremely nice for him to email me with that note. In fact, I saved it on my cell phone for future peeks at it when I am hitting a moment of frustration in being an advocate for the kids.

My latest advocacy efforts – besides the actual transplant, my nephew’s needs, and special education services have been to get a kidney removed from Quinn. As with Gage, she has excessive urine output and it impedes her social life and her emotional well-being because of her being self conscious about it in how it relates to overnights.

I really had to jump through hoops to have one of Gage’s removed. Originally I had wanted both out, but Dr. Kind talked me into one (in case the transplant failed and he went on dialysis, at least he would have output and would make dialysis less complicated), then she said we could go back and have the other one removed.

For Gage, there was a face-to-face team meeting, a 24 hour urine collection and appointments with a urology surgeon, and calls and reports back and forth. My point was that they were already going to be in there, why not get it out? There were (are) people that believe that since they have never done it and they don’t have scientific proof that it would help with the reduction in urine output that we should leave the kidneys in. Sometimes though, because all of our kids are different (the biggest understatement in the world) us parents know them best. We noticed a small reduction in urine over the months following Gage’s kidney removal. Then one pull up, not two. Then dry pull ups and then none. I will always believe that the removal of the kidney is what helped. A person who denies that could be a reason is unreasonable – because we can’t know for certain.

If we as a medical community never try anything new, within reasonable, safe limits of course, nothing will ever improve. That makes sense, right? Because if there weren’t any different ways to do proceed for kidney patients, like dialysis or transplant then where would we be?  You realize that someone, somewhere looking at a renal failure, dying patient said, “Let’s take all the blood out of them and clean it! Yes! Just clean out the toxins then put the blood back in!” And if someone hadn’t said to themselves, “You know, I think we could take a kidney from a deceased patient and give it to someone else.”  Then Gage would already have died and we’d be watching Quinn die. We have to keep moving forward, trying and failing and trying and succeeding.

Deep thoughts for a Wednesday, I know.

So, I’ve moved on from pushing for the transplant before the need for dialysis to the removal of the kidney. The sentiments about me from the doctor above flashes through my head because that is one way a team of people could think about me, and I hope that is the case.

Again, if they don’t, that’s okay with me. I sleep just fine at night.

I hear (through a very reliable source) that Cheryl is approved to give Quinn a kidney. Kinda. Sorta. Probably. No really, she’s mostly approved, almost completely, depending of course, except for one little detail.

That Liver. The one we looked at today closely with the eyes of an ultrasound Doppler thingy. Quinn’s also been put back on a liver med she was taken off of in December and we’re hopeful her liver numbers will come down. We retest next week (I’m shooting for Thursday to take her so I can follow up with liver doc Friday).

After I spoke with our transplant coordinator I told Julian, then called Cheryl. I said…”Hey, I guess we didn’t have to wait, you are apparently approved by everyone, and so you can donate to Quinn as soon as the liver team clears her…so I guess this is a kinda, sorta approval and this is probably going to happen.”

I know, anti-climatic, right? But we were still thrilled and thankful and Julian and I sealed the news with a kiss at the office. I could tell Cheryl was happy and excited to be this far along, too. I figure when we know for sure, for sure (that means when a surgery is scheduled we can have some kind of celebration with Cheryl’s family.

Until that day we need to wrap up some things…

• I need to confirm with a doctor a new med protocol.
• I need to see if our application for a medical spending account is/was approved through a non-profit here – they match funds – and then use the money for meds, etc.
• I need to get confirmation of the removal of Quinn’s kidney.
• I need to get someone to head up a little care team for Cheryl and her family for food and such during her recovery.
• I need to finish the process for applying for medicare/medicaid for Quinn.
• I need to make a work plan for me as I am the primary person for all things medical.
• I need to make a care plan for the relative we’re helping while we’re out of pocket.
• We need to decide about timing for surgery – rush and get it done ASAP or wait until after school starts. There are a lot of factors, including; work flow, personal, school start, Cheryl.

That’s enough for now, I guess. I need to go to bed so I can rest up.

Quinn has to have a doppler ultrasound (check for blood flow for the liver) at 12:30 today and she can’t drink or eat before. Sure, she could have gotten up before 6:45 and eaten, but where in the world is the fun in that?

So after my nephew’s drop at his program the sitter get here and I work a bit, I’ll take her to Children’s Hopsital. Hoping there’s absolutely no change in the ultrasound from last December. I am not expecting a change to be honest. I’m not expecting some crazy call about how bad her liver is…seriously.

But you know that is WRONG, WRONG, WRONG of me.