Today marks the 10 month anniversary of Jody’s kidney donation to Gage. It’s almost a year. I can’t believe it.

In honor of Jody and Gage’s Kidneyversary I want to provide you the top 10 reasons we love Jody’s kidney.
10. Energy. Enough to play an entire day without stopping.
9. He looks better.
8. Less meds.
7. No more shots.
6. He eats better.
5. He’s gaining weight.
4. He’s growing taller!
3. No dialysis…he has most afternoons free.
2. His pee is yellow! And there is less of it!
1. He’s alive and happier.

Thanks Jody. Every day, and especially on the 27th of each month I think about how you are a mom and I’m a mom, and somewhere, in the center of you heart on that day 10 months ago, we connected in a way that will never leave me.

Love you, and that wonderful, yellow-pee producing kidney.

Happy 10 months Jody.

I would like to show you a picture of the hole that Gage kicked in the wall in our stairway while he was in timeout yesterday, but I can’t bring myself to record it at this point with actual proof that it absolutely happened.

So, instead I bring you the quality picture of what a $49 digital kids camera will take – you’ll want to know too, that this is one of the better quality photos. It’s a picture of my favorite poster – “Keep Calm and Carry On.” It’s in our family room so that I can look at it every single day and remember that in the state of crisis – or during homework, when it really counts - this is the best advice I can give myself.

Gage’s tutor (courtesy of a non-profit transplant organization) mentioned at the end of Tuesday’s session that the difference in what Gage has learned since she met him in Kindergarten, Take 1 is remarkable. She gushed about him being able to HIS grade-level work. He’s “doing 2nd grade work!” she said and I smiled.

All I could think of is how wonderful it is to hear and how honestly hard it has been. The first thing that came out of my mouth was “It’s come at a price; a great cost to the family.”

I feel bad about thinking that, but sadly it’s true. Not that it wasn’t worth it of course. But I was thinking that it will never be easy. That if I let up for one minute, it could be devastating for Gage’s future.

So, I leave you with a quote from Coach on Friday night lights…”it’s not our burden, it’s our privilege.” And then I’m going to go recite that many times per day, especially when I am doing homework our boy.

I have an incredible circle of friends. I have friends that represent each decade in my life. They include my mother women, men, my mother, my sisters.

Throughout those years I’ve had many challenges but none like facing the mortality of my child; or two as my case may be. When Quinn was diagnosed, a sister was with us. Thirty minutes later when we walked through the door of my house, where another sister was, and my mother wrapped her arms around me while I sobbed from my gut. It was a moaning cry that scared both of us and as she held me I handed my brand new daughter to Julian because he was scared for me in that moment. Within the hour a friend called. “Hello?” I answered. “Hey! How are you? When did you get home?” she asked. “Things are bad. The doctor says she has a kidney disease. Just as we left the hospital and we have no more information.” With all the shock that comes from hearing news like that she acknowledged the terribleness of the news with “I’m sorry” and “I love you” and “No, no, no. This cannot be happening.”

Two days later I’d sent this email to 30 or so people…

Quinnlin is beautiful! We are thrilled she joined us on Saturday, weighing 9 lbs., 9 oz. and 19 inches long. She has wonderful eyes, dark brown hair, long fingers and toes and a big loud cry. She’s eating and sleeping great and Mom and Dad could not be prouder. Big brother Gage is handing out plenty of kisses to her since we came home on Monday.

Julia, Julian, Gage & Quinn

The people in our lives surrounded us with love and care and concern and food and well, anything we could want and everything we didn’t even know we wanted. I am not sure what propelled me to share our story so broadly in those early first few days. I am sure however, if I hadn’t, I would be a different mother and advocate for Gage and Quinn.

Through every bit of sad news, every day of waiting for results and treatment options, each good milestone reached and many fears realized, my friends have been there with me. They’ve carried me some times too, and had enough belief (or acting skills) that things would (and will) be okay. And they’ve taught me that if sadness comes or if tragedy comes; that I might even be able to survive it.

But life with a special needs momma is not an easy one. Being my friend isn’t always fun. It must be sad to feel my sadness by default. My friends must feel helpless sometimes even though they don’t realize that just showing up is helpful. Not to do laundry or feed us during a crisis but just to be with us and interested in our journey.

I know I soak up a lot of energy from my friends because I demand that they know what is happening with the lives of my special needs kids and they understand that it is part of who I am.

Not all friends want to try to grasp what I am going through on the emotional end of the fallout of having two children faced with a chronic, sometimes fatal disease that can consume our family life. I wish I could tell them I understand their need to bury it within our day-to-day contact. And I understand, too, that it must be hard to look at us and think about the mortality of the children in your life that you love. I get it.

My friends, those that have loved me for any number of decades, years or months in my life, understand that I’m a highly special needs friend. And they love me anyway.

* In the early days the diagnosis went back and forth. Apparently at the time Quinn has cysts that looked both dominant PKD and recessive PKD (arpkd – what she was ultimately diagnosed with) and multicystic (not as progressive, but still cystic). Ah, the roller coaster of diagnosis and treatment!

When I saw the snow I ran outside.
And then my sister came outside too.
We played snowball and made a snowman.
We went to a friend’s house up the road and they had a bunch of snow.
We made the biggest fort ever!
Quinn, my friends and I did it all by ourselves.
Then we made another snow fort as big as the other one.
We all were very cold.
My friends came over for some hot cocoa to get warm!
And we sat by the fire.
And then when we got back the snow fort was frozen solid!
The snow as frozen solid when it dropped from the sky.
The snow fell until midnight.
The next morning, our creek was frozen!
We went to our tree house. We couldn’t get in.
There were icicles coming from the ceiling.
The End.

This story, as dictated to our babysitter. Interestingly enough, this story is almost completely true. The exception is the creek if we are talking literal freezing and well, I am not sure of the icicles on the ceiling of the tree house since I really didn’t go out and play in the snow.

Over dinner I asked Gage and Quinn if they knew why they were out of school tomorrow and yes, they both said it was Dr. Martin Luther King’s birthday. We talked about why he was such a remarkable man that brought about change. We talked about segregation in school and how it is everyone’s right to vote, not just people with a certain skin color. We talked about how he died when I was too little to remember.

Five minutes later Gage said:

“You know what Mommy? I learned that Martin Luther King didn’t use weapons to fight; he used words.”

Well said.

1. Gage’s boy scout cave sleepover was canceled due to freezing rain and snow in the South. I just canceled the morning everyone was leaving. We thought this was funny that they waited to cancel, since you know, one of the boy scouts mottos is Safety First.

2. We’d planned a girls day with 4 girls and 2 moms coming over. They are in the neighborhood and I’m very excited. We’re still going to try to get rid of the boys since Gage can and often does change the dynamics of such a girl event (because 2 of the girls really like Gage).

3. I hear that the kidney transplant of someone I know went well. It was on the news in Kansas City so I guess it is public now. But a PKD Foundation staff person donated to a Walk for PKD coordinator she met in September. It happened in Arizona, so she had to travel to do it. That’s how it works you know, someone hears a story, feels a connection, then donates. Brings me back to when we learned our people wanted to donate to Gage. And then the day of this transplant I was thinking about Jody all day. I still have her little card and gift from our 9 month anniversary – just a tad behind as we mark 10 months next week.

4. Baby Parker, who was admitted for lung issues and infections is “as stable as he’s going to be” says mom. There are some 5 specialists debating a g-button for feeds and meds because he is aspirating into his lungs when he eats…one doc doesn’t want it done right now. Rachel – I hope you talked to Jen last night. I know you could offer input. I couldn’t offer any real advice besides listen to your intuition and that’s it’s okay to question and push for something. You though, have real experience.

5. Quinn’s tooth is loose. It’s the other top front and now has shifted to the middle and looks quite strange. Mutant looking for sure. She won’t wiggle it or let me near it. Even the promise of a fairy dollar won’t do the trick.

6. We’ve put an offer on a office building. It’s good space and nearby. This could mean that we will get a floor of our house back. Gage is very excited about this prospect because some of the space would become a playroom. Also, when I told him that I would probably keep my office here he said “I want you to have an office there so I can go to aftercare.” Apparently all we have gone through to be at home for him has gone unnoticed. Ungrateful.

7. Happy Saturday people. If you are in the south, stay warm and go and buy milk, bread and toilet paper RIGHT NOW! You know the shelves will be empty soon.

They sure were cute and sweet way back then. And the always present Sally and the always present Quinn-does-whatever-her-brother-does photo.

Parker, the young son of a friend of mine, is very sick. He was admitted with a collapsed lung and big concerns with infections. He’s been put on serious IV antibiotics and is doing a tad better tonight. He has ARPKD and has always had breathing issues. I met his mom through the PKD Foundation and she is one strong mama. Another son of hers has special needs too and her hands are quite full yet she handles it all with grace and strength. I’m anxiously checking her blog to see what progress he has made. He’s a fighter – we know that for sure. There were docs a little over a year ago that gave him little to no chance to survive after birth. It’s scary to watch your child in the hospital, but for those of us with chronically sick kids its even more frightening because one issue can lead to another or uncover something you never knew about or something that you didn’t think would come so soon. Not that this cannot happen with people who have healthy kids, but for people like us it is always part of your thoughts every time they run a test or the doctors comes through the door.

A while ago I mentioned my cousin and how she was sick. Turns out that the good fortune of a cyst in her ovary lead to the early discovery of ovarian cancer – stage one. The surgery to remove her ovaries lead to the early discovery of uterine cancer. She’s now fighting the cancer and doing okay. She’s got a strong attitude and I’m very proud of her. I love you cuz. And I owe you a package…it’s my turn this month. I swear, it will be in the mail by Friday.

I must also mention a friend who was paralyzed in 2002 while working on a Habitat for Humanity House. She is currently in a facility fighting an infection in her bloodstream that rendered her sick enough she doesn’t remember something like 5 days. When Gage had his transplant she visited us – this was not easy for her – and we were touched by her presence and her prayers. We love her and hope that the end of January brings release from the facility and a healthy rest of the new year.

Lovely S was released from the hospital today. Preliminary reports say the tumor was benign as the doctors predicted. We’re so happy for her and her family. Her little sis, Quinny B’s BFF is going to come over tomorrow if we aren’t sleeted into a school closing (please, let there be school tomorrow) because we’d love to have BFF over here for some fun!

Poor Quinn and Julian with their genetically crappy sinuses. They are having a rough nasal time right now that requires a lot of saline, tissue and prescription nasal spray.

Back in September when Gage tried rapamune he got some horrible ulcers (and lost a lot of weight from the pain while eating) all over his mouth and down his throat. Since then he’s not really let his lips heal from the trauma and has started they habit of pulling skin off his lips. So, with the colder weather there is a lot of opportunity to mess with his chapped lips. He will not stop. And every time I see him doing it I think about all the germs he is putting in his body and it makes me terribly nervous since it’s winter. His immune system is compromised and each time I see his dirty finger nails move towards his mouth I freak out a little bit. Plus, his lips look strange now – almost scarred up. I guess this is how it will be for winter.

I just got over a cold but have a nice little cough. It is fading however so maybe this is the end of it.

People have been asking me about Quinn’s test results from the day after Christmas. Quinn had labs, an ultrasound on her liver/kidney and an echo cardiogram. Her labs came back and they are elevated (duh) at 1.4 creatinine. This is her new normal though. In the last 6-9 months it has been increasing from our comfortable 0.9. Dr. Wonderful (out of town doc) will surely notice this at our appointment in February and comment on the increase in number and she’ll provide the percentage of decrease of kidney function for the parental benefit. We also see Dr. Kind sometime in February (local doc) to discuss Quinn’s general health and go over the results.

Generally, besides her labs, everything looks the same. She’s having some problems that we need to discuss. She has a lot of stomach pain. She’s extremely tired. So tired that she would probably sleep 13-14 hours a day if we let her. She can’t do any thing that requires too much energy past 4:00 after a day of school. Sadly, I think her hemoglobin and hematocrit are just above the line where she would qualify for EPO – which would provide the much needed energy. It’s crazy to want to wish for lower numbers so she will be able to get EPO, but that’s the reality.

Dr. Kind still thinks that Quinn won’t need a transplant by age 8 like Gage did. She thinks we’ll get a little while longer out of Quinn’s kidneys because her growth hasn’t stalled out at all. Her curve on the growth chart is a nice, normal curve. I need to go back and chart Gage’s creatinine and BUN for this age and see where it was at. I do know, from memory that by the time Gage was 6 1/2 (Quinn is just 6 1/4) his creatinine was already over two.

So, we wait. We wait for Quinn’s health to take a turn in the wrong direction, then we start over again.

We know a lot more now. This is both good and bad. February will be a telling month for our little Quinn I think.