1. No matter what you PLAN for in the lives of your sick kids, something you didn’t think COULD happen does happen.

2. Mental illness in little kids is scary. There’s no way to plan for it and no true path to treat it.

3. Sometimes the quality of life of sick kids really doesn’t matter to the healthcare industry. It’s a numbers game in more ways than one.

4. Reaching out to family and friends continues to teach me about the good in people. Their love and comfort can cover you with affection through the bad times. Maintain those relationships as best.

5. A strong marrige is something that you can take for granted and ignore for lapses of time. I don’t recommended this for extended periods of time, however.

6. Money still doesn’t grow on trees.

7. Raising sick kids means that the challenges just change, they don’t necessarily get easier.

8. Having your crying child reach for you while being wheeled off to a kidney transplant is as heartbreaking as hearing your child wants to kill themselves and die.

9. Laugh at your kids when you can. And laugh at the ridiculousness of your life sometimes, too.

10. Being an advocate for yourself or your kids is a never-ending, changing, challenging endeavor. Grow with it. And fiercely fight for whatever the better thing is or even what the better thing might be.

Somehow I managed to break down my connect to the WWW. I could still send and receive emails but I couldn’t go on line to do anything! No blog! No Facebook! No blog reading!

I could do a few things through the phone so I was able to Twitter. And read a couple of blogs I had loaded on there already.

It’s good to be back. I missed you, oh Internets People. More updates later.

I guess I needed a short break from the blog. I’ve been enjoying time with friends and family. We had our Christmas last this year, just yesterday, so the platters and serving bowls are just getting put back where they belong and the pink pudding (don’t ask) and squash casserole are still yummy on day two.

I have to get back on some kind of routine because there is still a lot to be done this week. Tomorrow is the long-awaited-and-didn’t-need-to-rush-it-after all liver appointment. They mistakenly (?) didn’t look up the ultrasound images and we had that horrid day at Children’s Hospital that left me in tears and wondering how they manage to pull of extremely well-timed, successful transplants, yet somehow they do. Quinn’s labs are “stable” for her right now and we have a little time until transplant. This is both good and bad.

We are also trying to mess around with Gage’s meds a bit because of the sleeping issue. We tried Medadate (?) thinking it wasn’t as long lasting as concerta, but it didn’t help rest any better. So, we’re going to try a sleeping aide for a bit to see if we can get him into the habit of sleeping again.

Gage is leaving town in the morning to go with his cousin for a few days and we’re all happy about that. He could really used the change of pace (we could too, because he’s exhausting) and he loves being with the cuz, so expect to have no incidents. Unless his cuz asks him to do something illegal, because Gage will do it, and that wouldn’t be fun to get post-holiday call from Auntie.

My BFF is in town for some more days and we are headed to massages on Tuesday and we’ll likely see a movie or two this week. Without Gage here, it simplifies things a little bit because Quinn is much more suitable for bring alongs…just about anywhere.

Quinn’s ears are healing nicely, the Internets People who sent earrings will like to know. We’re counting the days until she can switch earrings and the honored first pair keeps changing. I’ve told her she can change them on Inauguration Day – that is exactly 6 weeks So really, aren’t we all counting the days?

I have a little bit of work to do, but not much, so I’m looking forward to the down time. I need to get going on organizing some pictures for scrapbooking (I still haven’t done Gage’s pages from transplant…um…avoiding much?) and cleaning my home office/craft room.

We had to do labs for Gage again on Friday. I’m anxious about this because his numbers are off slightly. You never know it’s it’s a blip or a trend in the wrong direction. It’s always like living on the edge of another bad day. Must call the transplant team for results tomorrow.

That’s it for now, except I’m sending Quinn’s kidney failure info to another transplant center to get their opinion. I’d have to fight insurance to go out of network, but it can’t hurt to see what their criteria for transplant consists of, right?

Oh! And I’m happy to report that Quinn’s EPO shots are down to once a week. So now apprently, only once a week will she tell me she hates me. That is until she becomes a pre-teen.

Quinn’s Dear Santa Letter made the rounds through the PKD Foundation to a local TV station (WXIA, Ch. 11/NBC) contacted us to do a Christmas Eve story on Quinn. I don’t know how long this will be active, but here is a link to the written story and the video. Wait for the video to load – it’s on the right hand upper side.

Happy New Year week people!

If you are here by way of Quinn’s Dear Santa letter, welcome. If you want to know more about our story see the About Me page link to the right. If you have any questions about us, the effects Polycystic Kidney Disease has on our two cute kids, Gage and Quinn or The PKD Foundation (an organization we love and support fiercely) please leave a comment or email me.

If it wasn’t so late in the day, I would try to be witty! I’ll have to muster up some witty tomorrow.

And really, that Santa letter was all Quinn and came out of the blue.

Quinn: “What does A-lease Mommy Dodd mean?

Julia: “You mean Feliz Navidad?

Quinn: “No! A-lease Mommy Dodd!”

________________________________________

Quinn to Mommy coming home from work: “Why are you here?”

Me: “What do you mean?”

Quinn: “Go back to work! Miss Rachel is more funner than you!”

________________________________________

Gage (seeing a light display): “That’s a weird looking Santa.”

Me: “Well, it could be because it’s an Elf!”

________________________________________

Quinn, upon being asked about writing her Santa kidney letter: “I wrote it because I did.”

Me: “That makes no sense to me…what do you mean.:

Quinn: “I WROTE IT BECAUSE I DID! I CAN WRITE SO I DID! DUH!”

Me: “Cut the attitude!”

Quinn: “Santa won’t care.”

________________________________________

Gage, on mall Santas: “I think those are just pretend Santas because Santa is too busy. I know this because they all look different.”

________________________________________

Gage, Christmas Eve: “I’m going to stay up all night.

Me: “Then Santa won’t come. Not until you are very asleep!”

Gage: “What if I pretend to be very asleep?”

________________________________________

Talking about in what ways the kids look like us, referring to pictures of us when we were little.”

Me: “See, I have pony tails in that picture. So I think we really look alike.”

Quinn: “And Daddy is there in some kind of clothes.”

Me: “Well, that is how Daddy’s Mommy dressed him. He looks….”

Gage: “You mean like a moron?”

________________________________________

Julian, at noon: “It’s Christmas Eve and I haven’t even started drinking yet.”

________________________________________

Quinn’s mole that the transplant team required we remove prior to transplant (because it was suspicious and we had to get it off before her body was flushed with immunosuppresants) is completely benign. I had thought that with our luck, certainly it would have been more serious, but it is not. So that is one thing down.

Quinn’s labs are stable. For those keeping score, her labs have improved slightly and now the transplant team won’t send a recommendation to the insurance company for a transplant. Her creatinine is 1.9 and her BUN is around 55. The doctor thinks that the recent addition of the procrit (EPO)…she mentioned something about volume and expansion and well, she lost me at “kidney volume…” but I take it to mean that we have a temporary fix, kind of like the procrit is faking us out. She’s starting to feel a little better, so we’ll take that.

Of course, this temporary fix is just that, temporary. She is in acute kidney failure. She will need a transplant. It’s a matter of when. And it’s a matter of how long donor testing will take. Most likely it will be a ridiculous 3 months (I say ridiculous because other centers where some kids I know have been transplanted take a much shorter time).

I just went by a store to find the last two videos I needed. See how things are starting to look up? And then Gage’s doctor called to say she got approval on the $120/per month med from our insurance. So that is now filled and waiting for tomorrow morning when Gage will try it – we’re hoping it works and we’re hoping he’ll be able to sleep. Would have been nice on Christmas Eve. You know, the Santa visit and all.

Gage’s physcharist wanted to try another adhd med for Gage. The concerta he’s on, while certainly helping him focus during the day, has him up until all hours into the evening. It’s between 10-midnight when he finally settles in to fall asleep.

The lack of sleep isn’t helping his attitude. And it isn’t helping us either. She’d wanted to change the med to another one – an intermediate drug that isn’t as long acting as concerta. Because it is a controlled substance, I had to leave work and pick it up from the doctor. We’d wanted to try this for a couple of days, give her input, adjust if necessary while he is on winter break from school so that we’re not starting back in the new year with additional behavioral challenges.

I dropped of the drug and then we took the kids to see a Christmas light show about an hour away. We had dinner and frankly, had a lovely time. There weren’t any incidents with Gage sulking, melting down or full blown jerkishness. A success even.

When I went to pick it up tonight the pharmacy said the insurance company won’t pay for it. It’s $120 out-of-pocket. Apparently the insurance needs a really good reason and the doctor needs to call and get approval. It is so frustrating to navigate insurance and meds. We’re already paying $2000 for insurance (just lowered it a little for less coverage) and $300+ for Quinn’s uncovered drugs, and Gage’s play therapist at $300/month. Taking another $120 hit isn’t something we can do right now, so Gage will suffer with insomnia if we can’t manage this somehow with a covered drug.

So, tomorrow, Christmas Eve might I remind you I need to call and talk with the doctor, get approval, take the perscription AGAIN to the pharmacy – and that is only if it goes the way we want it to.

Sometimes it just feels like the system is against us no matter which way we turn. On the best of days when I have time and energy and resourcefulness, it is a struggle to manage their needs. I’m educated, in a deeply committed marriage, have strong family and friend support and I’m a pro at foreseeing what will go wrong (because of my job in advertising management/production) with a situation. I can usually work it from both ends, juggle, manage, and keep it all going smoothly. But sometimes the system fights against me in getting Gage and Quinn the treatment/meds/care they need and deserve.

I wonder a lot about the single parent that doens’t live in a city with family, and they have to work for someone else, and they don’t have the time or energy to work the system. What happens to their kids?

It would be great if a doctor and a mom could agree on a treatment for a child that is appropriate for that child, without jumping through hoops to get it for them.

We all suffer because of the system. But Gage and Quinn suffer the most. And that is just wrong.

I cleaned out Quinn’s backpack over the weekend. It was full of papers from the past few weeks and art projects and such. Teachers were gratefully filling up backpacks around the country, decluttering their space for the New Year.

Inside the backpack I found this letter to Santa. It’s a sad state of affairs when your kid’s Dear Santa letter says “I will be good” next to “I did not get a kidney.” And no, I didn’t tell her to write this. I would have at least had her use proper grammar and spelling.

So far, Gage likes his weighted blanket. It’s 10 lbs total and he smiles when he gets under it. It’s not improved the amount of sleeping time – which Gage needs desperately. He’s out of school for two weeks, so we’re letting him sleep in and take his meds a little later. So far, two days and his outlook is sunnier. We think it’s the rest. He’ll tell you it is because he is out of school, which he says he hates.

His behavior spiraled at school and at a field trip. A special ed aide who can usually attend field trips didn’t and well, it didn’t go well. He made a threat and used the word “kill” and so that was well noted by teachers. It ended up on an eval form for the physchairtrist.

There is a main reason his behavior has spiraled. He is completely off routine. School the last two weeks was a fit of starts and stops and differences that it has my routine-loving boy out of sorts. Never under estimate the power of the same schedule.

He’s always been a routine-lover. From the time he was a baby. We loved routines, so it worked out well. Little did we know, right? When you are holding your itty bitty baby and they crave a routine of bed and wake up and naps and eating you just don’t know that they really will thrive in that because not all kids do, obviously. The word “structure” is used quite frequently in his IEP plan and used when discussing Gage. We all know he loves routine. So why are we suprised he is going from 5 star days to 1 star?

If I’m honest, he’s not as bad as it was pre meds, but it still isn’t great. It’s hard to remember how far he’s come. I always feel I have to remind the school team of that when we’re discussing Gage.

This weekend we found ourselves hosting our babysitter Kate’s parents. They came down for her graduation from chiropractic school. When she officially graduates in 3 months she’s already headed to a job that is under contract. We’re thrilled for her, but will miss her a lot when she moves from Atlanta. The kids adore her energy. We adore her. We hope when the kids are older she will take the kids for a visit over summer vacation because she is going to live somewhere fascinating! We’re so happy for her. The kids are really going to miss her. And so are we.

My sister Tammy tried to fly from Minneaspolis to Chicago over the weekend only to be stranded in Atlanta on a layover. So we have a short visit from her that included her getting to see Kate too. Kate played rugby for Tammy and when Tammy learned she was moving to Atlanta about 4 years ago she hooked us up. We were so lucky. We’re hoping the sister finds another gem but honestly we know we’re not THAT lucky.

Am hopeful that the kids will help me work on a couple of crafting presents that we need to get done this week and I’m hopeful to catch up on some thank you cards that have been in the To Do pile for many weeks.

Gage and Quinn cleared out our cloak closest yesterday. I’m still finding things they moved out in order to fit some toys and books. I love it when the make these forts. I don’t love finding my things all over the place.

I have a little bit more shopping to do and hope to wrap that up tomorrow. We have our summer nanny back for winter break from college and she’s going to be watching the kids this week so we can finish up some work then take a week off. Friends and family are coming in and then I’m off for a week vacation at the beach. I could not be more excited about this trip. We got a deal on the house from last year ($400 for the week!). Rest, writing, relaxtion and some frozen fruity drinks.

Both Drs. Kind and Wonderful called me after hours last night, a little bit shocked like we were that the team declined to send Quinn’s transplant recommendation to insurance. Dr. Kind (in town neph) didn’t understand that we were denied by the hospital – she thought insurance denied the procedure. I told her there wasn’t anything with insurance that I could appeal because they haven’t denied it and so we learned she didn’t have the whole story.

Dr. Wonderful (out of town neph) agreed to have a discussion with their transplant team to see what criteria they use at their center – just for comparison. And maybe their criteria is different and Quinn would fall in there? Then I guess I would have an argument to do it out-of-state and work to appeal the out of network rule. What I’ve always understood about pediatrics and failing kidneys is that it isn’t just a number they look at…there is a quality of life to assess based on a number symptomatic problems. At least that’s been my experience with Drs. Kind and Wonderful.

Dr. Wonderful also wanted us to run labs again for Quinn and so we took her this afternoon and will have the results Monday.

The thing about navigating something like this is that there isn’t always a clear direction in which to head. There’s no magic formula. I’m just moving forward on intuition – something I’ve learned is a skill that one has to acquire. As a parent to special needs kids sometimes you have to just figure out what NEXT step that makes sense focus. Not get to far ahead of yourself, but still make sure something else isn’t falling apart in the meantime. For me, my next step was talking to Drs. Kind and Wonderful for their opinions. It’s safe for me to say that they confirmed some thoughts I had about the situation. No need to address those issues until they are part of The No Plan Plan.

We’ll see what labs are Monday and go from there. I’m getting a labs chart/history on Quinn emailed over to Dr. Wonderful. That’s what I can do. What is next? I have no idea. But I know one day what I don’t know right this second will be a part of The Plan.