Dear Dr. Pearson,

You must be wondering why the title. I have been using it here when I wrote about Gage’s transplant surgeon. I was under pressure to come up with a moniker for you quickly one day and well, that’s the best I could do when I started to discuss you on this blog several months ago.

Now that you are outed, both in name and in photo, it feels a lot better. I was thrilled that you were speaking at the PKD Convention in June because I saw it as an opportunity for Gage to see you while he wasn’t in a hospital gown or an IV in his arm — you know that can put an 8-year-old at a disadvantage. And frankly, it’s kind of nice for me to have a lasting memory of you and Gage that didn’t involve you having your hands inside my son’s abdomen inserting a friend’s kidney. Because really, that’s one of the only ways I could picture you in my head the last 5 months.

That. And when you came in after Gage’s surgery to tell me that he’d done well. That there were no complications. And that Jody’s "fine-looking kidney" worked right away. Honestly, you should know at that precise moment I showed great restraint. I had wanted to jump across the 3 feet of heavy air that separated us to hug you and weep. I had wanted to do or say something that was profound because of the moment, but I was simply so relieved I could barely think while I was gasping a little bit for air.

I think during the 3 day fog that is the ICU you visited a couple of times. I remember you telling me that Gage would now be in the capable hands of the nephrology team (and he is) and I remember being disappointed that you wouldn’t be able to see Gage progress in his recovery to life off of dialysis. I imagine it is strange to be the reason a child can live off of a machine and feel better because of your training and skill and then never see them actually do it, like the other doctors and nurses do during our many visits to the hospital.

I’m not sure how to say thank you. I can start by saying that I’m appreciative of your training. And your skill in the pediatric field of transplantation. I can’t quite wrap my head around what you must have gone through in your career (well, that’s not entirely true, I actually just googled you) to come to the place to be Gage’s surgeon in 2007. The one responsible for hooking up the vessels (right or wrong terminology?) that have given him a chance to live a better life. For giving me a chance to watch him live a better life.

I have said previously that there was no way for Gage’s care team to understand that he is as much a part me as each breath I take in a day. And as many challenges I have with what is our life because of Gage’s needs, I can’t imagine a breath without him. 

Thank you for giving me the chance to hope again. Because until his transplant I didn’t realize how much I was holding my breath; waiting to exhale. And to hope. I most certainly have hope again.

Many thanks and much gratitude,

Julia (Gage’s proud, lucky mom)

If you are here via Marla’s invitation to Marla’s Feast at Babette’s Cafe in October, welcome.

To learn our entire story visit the ABOUT page to the right ————–>.

In a nutshell, because of a gene both of us parents carry our children have the recessive form of PKD (Polycystic Kidney Disease). We didn’t know it until our girl was born 6 years ago. Our son, three at the time, was found to have it as well. You can learn about The PKD Foundation, the non-profit organization that I began volunteering for because of their commitment to fund research the day after we learned about Gage’s PKD. Besides raising sick kids, being involved with the Foundation has been one of the most rewarding things I’ve ever done. I’m thankful there is a way to turn our unlucky gene combo into positive action. 

This picture (Marla and Gage) was taken on a camping trip before last September, when Gage began dialysis and found us at Children’s Hospital 20 hours a week. As parents, we learned we were unable to donate last fall and that is when four friends came forward to be tested to see if they were suitable donors. The first two were and Jody went forward to testing. On March 27 our surgeons gave Gage her gently-used kidney and it’s been working like a champ since.

We still have a long way to go in the PKD world so our life is not without its challenges. Our daughter is 6 now and will have a transplant too – we just don’t know when. And probably, for them to live an average life span they will need more than one transplant. They are both on a ton of meds and have more doctor visits than I have in my life. But they are happy, well-adjusted (mostly) kids and cute as can be.

We think Marla rocks! On top of being a great chef and restaurateur, she’s got a big heart. Thanks Marla. We’ll be there by the way, trying to increase our check by ordering as many courses as we can handle!

If you have any questions about the PKD Foundation or us, please ask. We love new visitors; so pull up a chair and stay a while. 

With the exception of a meltdown by Quinn last night because I wouldn’t go downstairs with her to get her toothbrush we’ve had an excellent 4 days of behavior.

Gage is doing remarkable and that is good for Quinn. He is actually helping her stay in check by ignoring her when she is going down the path to Bad Choices (I like how that sounds like a destination, because after the few months we’ve had with behavior; it is, in fact, a destination.) and it is helping immensely.

We’ve been letting Gage stay up a little later than Quinn for a couple of months now. She needs more sleep (12-13 hours is about what her body prefers) – it gives him some chill time and also we’ve used it as a privilege for good behavior (although not consistently). Until about a week ago, he would sneak back downstairs while we were tending to her and watch about 30 minutes of TV (I know! Bad Mommy!). That is still happening occasionally but now we’re letting him stay up in his bed with books and a flashlight hanging off the ceiling shining on his loft bed for a while longer. He’s arranged books and work books from school on his bed in categories and for the last 4 nights/days things have been better. I have no idea why, but he is less resistant to working on homework and reading. I made sure he had books up there that he can read easily and it seems he is talking more about what he can do instead of what he can’t.

Some of this new direction/change is as a result of my seeing the behavioral doc last week – nothing like him looking you in the eye and saying "this is why that is happening" to help you figure out a new way to approach a situation. Some of it is me calming the hell down and not letting situations go from minor to major because Gage ticks me off. I’m working VERY HARD on I’m changing the energy (this is quite a bit harder than it appears on paper and in the comfort of a behaviorists office, where he is all…"well you should…and then that should happen…and then this should work…). And directing Gage (and by association, Quinn) more closely for play, activities for now doesn’t hurt either.

I know you must think I am a fool for even mentioning how well things are going, but there you have it. It’s out in the universe. I hope I don’t regret this tomorrow.

Today marks the day that Gage has had a new kidney for 5 months. Jody and I were talking about it a couple of days ago how it feels that is was recently, then other times it feels like it was exactly 5 months ago.

It’s strange still to believe it actually happened. We’ve moved into our new normal routine even, and yet, it’s still surreal.

Wow, I have some contradictory statements coming from me!

And we have Jody to thank for all of them. Have a great day Jody. I know that when I am getting Gage off to school without the thought of dialysis (it’s a Monday you know!) today I’ll be thinking of you.

You rock! And apparently your kidneys do too. All levels are still normal.

*I had to edit this because while I did acknowledge Jody’s birthday to Jody directly I missed it on this post. Her birthday was yesterday. For the combined birthday and kidneyversary we got her a VB bucket bag, Calico Red. She said she doesn’t know what all the gifts from us are about. To that I say, Jody, enjoy the new bag. At least give me a year to acknowledge it monthly with a surprise! Jeez.

And we sure are glad you were born, obviously.

School Year 2007-08. The first day.

This might possibly be the cutest picture ever of a Kindergartner. She had a good first day. She got on the bus around 6:40 am (for an 8:00 am arrival I might add…not to worry you late risers, they have adjusted her schedule as of yesterday to a pick up time at 7:20) with no problems.

And my Gage? Not so sure about 2nd grade. It got a little better when he got to school, not much better – like a small smidge better.

Seriously.

On the September 15 & 16 across the country in over 75 cities there is a Walk for PKD. It is a national event for the PKD Foundation and in our city, we’re having our 6th annual event. Last year the events raised over 2.4 million dollars for research, something near and dear to our family. Polycystic Kidney Disease is one of the diseases that has had an incredible influx of promising research that actually will make a difference for PKD sufferers. It probably won’t meant anything to Gage and Quinn’s treatment, but they could actually witness and be part of finding treatments and a cure during their lifetime. Now that’s important. That could mean a family like ours won’t have to go through what we have. There are currently 16 clinical trials for children and adults that suffer with PKD.

So go to the PKD Foundation web site and Walk for PKD section here and see if there is one in your city.

See how much fun we had?

Registration cuts off September 7th. If you can’t attend, but want to make a donation in honor of Gage or Quinn, let me know and I’ll send you a link to their pages. Registration can be a little tricky because there are a few screens, but luckily all of you are Internet savvy!

If you do sign up to participate, please check the box that Restricts fund to ARPKD Research – that’s Gage and Quinn’s type of PKD and obviously means a lot to us.

I should mention that these walks are planned locally by PKD peeps like me*. They have PKD, they know someone that does, or they have lost someone to PKD. These aren’t PKDF staff-planned events either. The PKD Foundation does an incredible job supporting us with the tools for success, but this is a grassroots effort that started less than 6 years back and raised $100,000. Our goal this year is to raise $3.55 million dollars and the grassroots effort in 75 cities will do it.

Come on, see if there is a Walk in your city and go do it! Bring the kids! Pre-registered fee is $15/adults $10/kids under 12. You can register same day. Then a t-shirt is yours!

I swear if any of my friends and family register same day I will throw donuts at you.

A cure is our finish line. (Isn’t that clever? I didn’t come up with it though.)

*And The Village. Thanks to Carolee too, my co-chair for our event here.

A little bit louder and a little bit worse.

That’s the only lyric in my head yesterday as I left Dr. KATB’s office yesterday. He is the behavioral psychologist we have been working with for a long time for help getting Gage’s behavior managed although its been nearly a year since we’ve seen him. We’d been cruising along over the year on dialysis and then the transplant came and WHAM! Gage is out of sync again. Our donor’s family swears he’s got an attitude because he has a female kidney.

The overriding opinion is that we are engaging with Gage too much (negativity). And the payoff for him is more attention. He approved of the other techniques we are using; positive praise/reinforcement (this is a mainstay) as well as the punitive actions we are taking for bad behavior. We discussed several examples of Gage’s behavior over the summer and we discussed how we can manage it differently.

So, to recap:

• We agreed Gage is a different boy now that he has a new kidney and he deserves a chance TO BE MANAGED before getting him evaluated for drugs (for ADHD, etc).
• We realized that we might be giving Gage attention for the wrong things (like over discussing how he knows more than he does). And we agreed it needs to stop. Last night.
• We agreed that we need to continue to ignore Gage’s behavior when we can. Like when he is standing on the arm of the recliner to get a reaction from me. And last night when he did it, I IGNORED HIM, he got down.
• Continue…no debates! Who’s in charge of this circus anyway?
• Natural consequences for bad choices. Depends on what it is and when it is as to the consequence. This seems to be working and we’ll stay on it.
• Keep things fresh (and him wondering) by changing around the rules without Gage knowing. Do not tell him any part of the strategy at any time.
• Did I say NO DEBATING WITH HIM? This is particularly funny to me because for a long time Gage has been evaluated on a regular basis and found to be behind developmentally in language. (A couple of nights ago he wouldn’t go to bed and came downstairs to tell me "Daddy said that whenever I wanted to practice karate he would do it with me." Well Gage, I’m pretty sure HE MEANT DAYLIGHT HOURS. But nice try.) He will always try to get us in a technicality. He’s smart that way. What fun for us!
• We talked about making sure the praise we are giving is turning into how we want the kids to please us and make us happy. So that is the focus instead of the widget.
• We’re all happy (noted with praise!) that Gage and Quinn are no longer beating the crap out of each other. Because that was just plain insanity. But putting both kids in timeout for any fighting no matter who did what worked extremely well.
• We agree that I am having residual feelings in need of expression ("I’m F.I.N.E." says my friend Jean) and writing about it all helps. So, I guess the obvious thing is to keep writing.
• See Dr. KATB next week and repeat.
• Take some time for myself. Go to the spa, or dinner with friends. Or maybe a movie! (Well, the doc didn’t really say any of that, but in case Julian is reading along).

I’m all for good behavior this weekend, okay?

My BBF’s sister, K was in an accident last week. It involved her car and a bus. Her feet where broken and one of her heels was shattered ("the worst I’ve seen" said the best surgeon who operated on both feet yesterday). And recently, her husband had a horrible accident with a table saw. It’s all unbelievable. K’s family is rallying around her, as they should at this time and my friend is handling some things relating to her medical care and her eventual release, recuperation logistics (she’ll be laid up for 3 months) and private night nurses, etc.

This happened at a time when their parents were visiting from out of state. The timing.

I was checking in on them since the 6-hour surgery and I got the scoop on K’s  day. I can’t do much but send my love since they are on the other side of the country.

During the call my friend spent a good amount of time apologizing for everything she’s ever said to me in response to me talking about the kids’ care or challenges relating to any and everything medical over the last several years.

She said "I’m sure now that I have never said anything remotely appropriate to you over the years. I had no idea and I know that every response I ever made must have been wrong."

I started to laugh.

She said "No, really, I am not kidding. I’m sorry for everything I ever said."

Listen Ck, if anyone can step up and do it, you can. You are one of the most freakish, list-making people I know. And that is an extremely good trait to possess during a medical crisis. You are a great person to have around when one’s mind is foggy with medical jargon. It doesn’t hurt that you are fiercely protective and funny either.

Love and healing sent to K and all of you.

As we’ve been battling Gage’s behavior lately I’ve been wondering how much of his behavior problems and educational challanges are as a result of kidney failure and neurological development.

Not that it matters in our daily routine or the Operation Get the Control Back, Take 2 of behavior mod, but it makes me think about what life might have been like if…

If only we were overrun with healthy kidneys.

I know it’s likely that Gage might have always been a "difficult" or "strong willed" child but perhaps it might have been easier to deal with if we weren’t busy managing him medically, and then the last year trying to keep him alive and get him transplanted. I’m sure it would have been easier for him, in his own internal struggles, if he weren’t dealing with dialysis, missed opportunities, and busy trying to live life.

As parents it’s easy to let go of normal educational and developmental goals when you are focused on helping your child live (live). It sounds so dramatic to say it that way but it is the truth. And let’s face it, I’m nothing if not dramatic.

Gage doesn’t have much confidence either. Julian says how Gage exhibits his frustration is exactly how he felt when he was younger. Julian says that if he couldn’t do it right the first time he often felt overwhelmed at the task. Gage gives up easily. It pains me to see and it leaves me feeling like I can’t help him enough to get through it. It doesn’t end at academics either. It flows over into sports, home life, computer games, you name it. So what is crappy kidneys and what is just who the boy is?

That’s why I am so interested in this study about kidney failure and neurological difference in kids ages 0-9. Obviously, if the powers that be are studying it, then there is merit to the possibility that kidney failure has a negative impact on brain development.

Occasionally I’m witness to the kids playing well with each other. You might even say they like each other.

Poor Lucy though. She could have ended up with any family, but no, she’s stuck here with us.