1. Work hard to stay connected to your spouse. It is very helpful to like the person when crisis hits.

2. Don’t forget to thank the people in your life who show up time after time when crisis hits.

3. Be ready when crisis hits. Really. If you have to deal with a disease…Always. Expect. That. Crisis. Will. Hit. Because it will.

4. Keep your expectations low about time lines.

5. Never underestimate the power of your child’s resiliency.

6. Do NOT for any second think you can survive a life with special needs kids without a sense of humor. If you loose it, find it; once you have it, hang on to it. 

7. Have your advocate hat on at all times. Do not, at any time, forget that you are your own (or child’s) best advocate.

8. Listen to your intuition. Then listen harder.

9. People will surprise you when you least expect them, but need them most. They will offer you organs if they know one is needed.

10. Remember that your kids still need to have a life, even when a medical treatment robs them and you of precious time.

11. Hang on. Hang on when you are sad and discouraged. Remember that there will be a resolution to the situation. Even if it is a bad resolution…then healing can and will come.

12. Tomorrow can, and hopefully will, be better.

Lucky 13. Thank G0d every day for your family and friends.

I’m afraid to type this for fear something will spontaneously blow up, but we have learned we are moving to the next step with a donor.

If you are the kind of people that are keeping score we have 4 potential donors (PD) that have turned in paperwork. That means they have signed on the dotted line to go through the first phase of testing – which is essentially a health screening background that the PD fills out and a waiver to offer blood for first round HLA testing (hospital screens blood two at a time). We have had two lovely women that have done this step and we have learned that they are equal matches. They are both one antigen matches. When this was realized, the coordinator asked that we be told which out of the two, based on labs, was a closer match to Gage. We all figured that would push one person over the other.

But the strangest thing has happened. They are equal matches on the next batch of testing as well. The odds of that happening, we’re told, are very unlikely. Because they are of the same age, and apparently the same genetic make up, we were given the task of picking one to move forward with complete testing.

This is not as easy as it sounds. So we did what any couple facing this would do: we made the two PDs talk (they know each other and we are all friends) and asked them to choose between them which one would go forward. They came back and said they couldn’t decide and that they were putting it back into our hands. They both were as equally motivated to donate to Gage. They were both as equally supportive of the other person to donate. And they were both equally willing to step up in case PD #1 is unable to donate for some reason.

You’re kidding me, right? No. They weren’t kidding.

We spent a couple of days discussing it and we were stuck. After all, we didn’t want one to feel that we wanted the other person’s kidney more or weren’t appreciative of the offer (I know this sounds crazy). And there was no clear way to determine which would be best for timing. They both have flexibility. They both have supportive families. They both are giving, loving, wonderful people who just want Gage to have a new kidney and chance at a more normal life.

So, what did we do? Flipped a coin. All of the testing in the world at our fingertips, and we flipped a coin.

Our goal is for PD #1 to move through testing quickly. And with the help of a dedicated transplant coordinator, a little luck, and a whole lot of persistence on the part of PD#1 we’ll have some answers by the end of February.

Remind me to tell you about keeping my expectations low in the interest of protecting my heart from breaking.

It’s not a matter of life and death but Gage has lost Sally – what I affectionately call Ugly Orange Kitty. Sally has been through a lot with Gage. The ARPKD diagnosis, testing, treatments, surgeries, dialysis, fun, sadness. 

By process of elimination, we’ve determined that it is quite possible that Sally, who escorted Gage to dialysis yesterday, was rolled up and sent to laundry. Unfortunately it goes to another company and when they shake and find things the items are usually trashed.

We have located Sally II on eB*y and are waiting its arrival at which time we will be trying to replicate 5  years of tears, love, chewing, washing, play and dirt on her to make her purrfect!

It was a lovely Christmas.

Of course, the kids are completely off routine, and they are a little grumpy from all the activity, including a little bug going around but all in all they have done well.

A couple of Aunties stayed with us and they were worn out. I could tell as they left this house that resembles a life inside they were happy to go. And I don’t even blame them. Because I want to go sometimes too. I’d even settle for a timeout. I often say…"please, please just put mommy in a timeout!"

Gage and Quinn had a wonderful time with family and friends and for the most part aren’t too materialistic in their desires for Christmas presents. That’s not to say they haven’t enjoyed their present opening, but they are as happy with paper clips (No, really. Paper clips.) and a pack of stickers as they are with a DVD or GB game. I like that about them.

The first thing they wanted to do was bake cupcakes using a new cookbook and muffin pan that a secret Santa brought to us.

We’re really lucky. Lucky to have these kids and friends and family that shower us with love and gifts. Gifts of their time and energy. We have our home and the kids are pretty content with their little lives. Their lives are full. We have each other, the people who love us, food and shelter, health insurance and dialysis. Life is good.

Quinn did absolutely splendid at her annual testing. It was easy-breezy getting her to the three locations within the hospital and we were done in under 3 hours. It almost seemed like nothing. You know, compared to kidney failure, dialysis, and testing for a life-saving kidney transplant.

I used to freak out about testing (HA! I laugh and mock you now you testing!). It used to be a hard day with both kids. Hard emotionally and just hard. Plus they were younger and hanging out a Children’s Hospital is no place to be if you are just passing through for the day. It’s exhausting. But being where we are on the journey now makes those days of testing seem simple. It’s all about perspective, isn’t it? We have a new perspective and we can never go back to the good old days.

Gage did remarkably well throughout our 2 days at CH. A CH is no place to rest though… say, let’s see – IF YOU ARE SICK. Because there is no possible way to rest unless you are sedated. Speaking of sedated. Gage is really funny to watch on the loopy medicine. This is given to relax him before we leave his side. And before we left his side we made sure to take video of him in his giggly, wild mode (pictured). Because we’re good parents that way. But we had to finish laughing our butts off first.

We heard back from the doctor about Gage’s liver biopsy. He has a mild case of bile duct malformation and CHF (which all kids with arpkd have so this is no surprise). I’ve not yet had time to consult with Dr. Google, but I expect that will happen later today. It means he will need a liver transplant later in life, but that sounds so normal and easy that it doesn’t even make me blink. I forgot to ask some questions, but I understand the doc is there tomorrow while we’re there for dialysis. How handy.

We got home mid-day and Gage has a bit of cabin fever. He’s recovered I’d say; well enough to attend school for the last day before winter break.

Something really nice and lovely happened during our 2-day stint at CH. Our schedule this week and next has changed due to the holidays. Our normal dialysis days are M-W-F. But this week it had changed to M-Th-SA so the kids could go next Tuesday instead of Christmas day. Gage wasn’t supposed to have dialysis today but a nurse was taken off of administrative work to do it for him before release so he wouldn’t have to come back to the hospital tomorrow.

Kudos to the CH people that offered that up and made it happen. And of course, the nurse that handled it for him today. We are planning a glorious afternoon tomorrow – that doesn’t involve any cleaning of blood or tests thanks to you all.

I should also mention that Gage had a splinter in his finger and would not let me remove it. Well, that’s not exactly true. He wouldn’t let me remove it with my hearing in tact or without sitting on him, while someone else held his feet. He talked about it a couple of nights ago and I tried to squeeze it out to no avail.

I wasn’t surprised when Gage came up with the idea to have his liver doc remove the sliver while he was under anesthesia today. She said no problem. I’m told that everyone in the operating room had an opinion about removing it! Because everyone is a sliver expert Dr. V said!

I’m sure when she and/or her parents were spending their hard earned money on higher education in medical school that she always wished that a 7 year old patient would rank liver expertise with splinter removal. Yeah.

That Gage is always thinking about the different angle. Man he can work it. That can be good or bad. Trust me.

Luke is doing great. It was a long day for Luke’s family but they are feeling much better being on this side of the day.

Luke’s old kidneys took just 40 minutes to remove. They were large and hard. They had expected and planned for them taking much longer to remove, so they spent some time waiting for Stuart’s kidney. Stuart’s kidney took several hours to remove.  I heard the new kidney started working right away.

Kirsten hadn’t seen Luke when I spoke to her around 5pm, but she expected to be able to see him as he was being wheeled by out of the ICU and into a recovery room. They expect he won’t need to be intubated past tonight – also ahead of schedule. I suspect that when K does see Luke, she’ll be able to exhale, because honestly, I don’t think I heard her take a breath the entire conversation.

And well, she wanted to check on Gage. Which amazes me. And it doesn’t.

Gage is resting well. His liver "looks good" on visual inspection and we expect pathology reports on Thursday. He has no problems with varices. At all. Not even a little. Gage is doing better having had a slushie and pop tart.

So, it’s been a great day in kidney and liver land. Great indeed.

I know you are looking for an update on Gage’s procedure, but I have to wish a very Happy Birthday to my older sister (I’m still the youngest! Yay!) Terry. I couldn’t let the day go by without telling you to have a great day. Take a nap. Let Ernie clean the house and cook. And please, to the powers that be, let the boys not fight today.

And well, if I were around you today, I’d buy you lunch. So, maybe next year. As in, next month, next year.

I love you. You’ve come a long way, baby.

This is a list of the most recent wave of help we’ve received from the long list of people who love us (or at least they love the kids). Thanks friends. Thanks family. We could not, and wouldn’t even want to try to do this without all of you.

1. Helped me weed a flower bed before a party. Then picked up the flowers for these 4 humongous pots I have that are on the left of the front walkway. Then she helped me plant them.

2. Laundry. Several loads. With our crappy dryer. We’re no longer proud about having our dirty laundry touched by friends. Okay, that’s not true. It creeps us out a little. But that out ranks us smelling nasty.

3. Helped me pick up the house. This has happened many times. You know the kind of pick up I mean; the kind where the house is overwhelmingly scattered, smothered and covered (okay that’s a southern thing from a chain of waffle places) with debris that remains from the day. That includes everything from half chewed dog bones, rubber bands that are the new fascination, toys that have and then don’t have the attention of the little home-wreckers and trash. I’m serious. Trash. Bits of paper and such just lying around.

4. Watching the kids at a moments notice.

5. Running errands. Like picking up frames for pictures that had previously fallen off the wall and broken, then sat lonely, unhung, and would have continued to do so had it not been done for me.

6. Food. Dinners. Many dinners. Lovely dinners. Comfort food.

7. People have called and insisted that there is something they can do. I love this because a lot of times I don’t know what I need until the day of or the second that I need it and these people that insist they can do something to help are usually right.

8. Grocery shopping for me. I’m not kidding. I have a friend that shopped weekly for me FOR. A. YEAR. She’s started to do it again for us and it’s that filler of milk, eggs, bread, bananas, grapes and turkey that we need mid-week.

9. People who are on call for me. They are the ones that I can (and have) called for any number of things that they have lovingly offered to do.

10. Someone paid for the cleaning of my house. REALLY. They did.

11. Letting me off the hook – or be completely late for parties, birthday cards, and the like.

12. Checking in on the us and the kids. Providing all kinds of little treats for the kids right after Gage’s dialysis started…games, coloring books and crayons (those twist up ones rock!), floam, and other things that I can’t think of right now.

There are more things but I’m just going to have to update the list later when they come to me. Thanks to all of you for helping us cope this last few months. Once again, you’ve helped us get used to our new life with dialysis and impending transplant. Thank you for the love and comfort. It’s my wish that all people going through something similar to our family are surrounded by people like you. I promise to pay it forward when I can.