I got a call this morning from the transplant team coordinator. She was responding to a message I left last week about the growth hormone not actually being approved by insurance and there being a problem. On the message I mentioned that I wasn’t sure who was handling this, but Dr. Caring had told me that they were.

Essentially she yelled at me. She told me that they do not handle anything pre-transplant. I said that’s what I had been told. After she angrily told me that they didn’t (OKAY I GET IT), she said that my Dr. isn’t a great communicator anyway and implied that is at the base of the problem. 

Now that really is funny. Anyone remember that the same department LOST. OUR. PAPER WORK? And I had never heard from them? Yeah. Thought so.

It’s getting harder to zen breathe. It’s getting harder to visualize love, peace and jumping bunnies. Okay, maybe I am visualizing jumping bunnies. They are just getting hit by cars.

There’s been movement on appointments and dogs around here. The growth hormone is standing still as I’m unable to figure out just who is responsible for appealing the DENIAL of the drug that will help my boy grow or get another one in the works to be delivered.

We got another dog. We were gun shy about going back to the shelter for another adult dog but decided it would be worth another try. I’m so happy we did. We decided on a larger and older dog than we originally wanted. But she was just too sweet to pass up on. She’s a chocolate lab/H57 mix and adorable. She’s fully house trained, crate trained, listens to commands and is not at all aaggressive, but does bark when people approach. Not in a "I’m going to bite your calves, but I will announce your arrival" kind of way. Her name is Lucy and we very much love her already. We’re still sad that Lola didn’t work out, but clearly Lucy is a better choice for us. She’s 6 years old, turned in by the owner, and probably would have lingered at the pound for a while, as families – who she is ideal for – desired a younger dog. We’re thrilled that she is with us! We’ll take her in tomorrow for a vet visit and since we’re so lucky in the health department, I’m sure she’ll get a clean bill of health.

We did hear back from Children’s Hospital about an evaluation appointment. We are scheduled for September 5th for the entire day. Here’s the schedule of our Meet and Greet day with Gage.

8:00am Clinic Registration

8:30am Transplant Surgeon

9:00am Coordinators

9:30am Labs

10:00am Social Services

11:00am Psychiatry (hum…)

12noon Break for lunch

1:00pm Financial Counselor

1:30pm Child Life

2:00pm Nutrition

2:30pm Nephrologist

3:30pm Radiology

I don’t see any "Wine and Cheese Served" on that list anywhere. Ah, come on, that’s just wrong.

There’s that jazz hand again on Quinn. And that t-shirt pretty much sums up this week of brotherly love.

Gage started 1st grade this year. He’s been back in school two weeks. If you’ve been following along since the last school year you know that Gage had his share of problems.  He’d been having serious behavior issues at school that were causing great amounts of angst for me and serious amounts of wine to be consumed.  He blew through not one, but two gifted, patient teachers last year and numerous amounts of specialists. It was a traumatic year for all. Teacher number 1, for Kindergarten, Take 2 was very happy it was the end of the year and I’m pretty sure Gage was part of the reason.

Since last summer when we instituted The Program – a specially calculated, expensive behavior modification program for us parents at the capable hands of Dr. KATB (The fine doctor that Knows All Things Behavioral) – we’ve been on pins and needles about school.  Last year obviously and this year as well. We’ve worked hard to get to a place where Gage’s behavior was moderately normal for a boy his age. In fact, we still have to wake up every morning committed to instituting The Program’s rules and guidelines. I’m serious when I say there are charts and graphs and notes and stickers and poster boards in neon colors and a nauesous amount of praise spewing. It’s been some year that is for sure. Suffice it to say that even Dr. KATB* said, out of an act of compassion to a crying mother that "Gage is hard. He’s just hard" and he didn’t even actually have to raise him during this process.

Tonight I went to Gage’s school for curriculum night and also to specifically learn the particulars about his classroom setting. I’m thrilled to report that Gage has had a good start to the school year. He’s participating, listening, being a good friend** and he’s doing the school work and enjoying it. What about that? I demand that you thank the Behavior Gods right now. 

In addition, his teacher (I’m going to have to think of a moniker for her) let me share Gage’s kidney status with the other parents and invite them to the annual Walk for PKD event. She wanted to encourage his school mates to join us on Walk/Run day. After a few Q&As and sharing his situation and encouraging them to talk to their kids about Gage’s kidneys and transplant many parents offered their support. The reason to share on a grand scale? Really, when I break it down? I don’t want Gage and Quinn to feel shame. Not for the disease, the effects, the treatments, the transplant. If we hide it I’m afraid they’ll believe there is a reason to feel shame. I want them to feel like we do – that it is what it is – so let’s deal.

I left there feeling warm and fuzzy. And then I came home and cried that Gage is having a normal start to the year. He’s within normal 1st grade development and he’s behaving like a normal 1st grader. I cried because I realized as I was sitting there that I haven’t felt like the parent of a normal classmate in a very long time, in spite of that pesky kidney transplant thing.

* Dr. KATB has just informed me he’s taking some time off to finish a research project. I’m not pleased that he will be unavailable for 6 weeks. I’ve speculated that this research project is about a certain little behaviorally challenged boy…

** For us this could be as simple as keeping his hands to himself OR in Gage’s specific case he’s not tripping deaf children in the hallway, which sadly, last year was reported on a day his teacher said was a good day. Really, when I said "That doesn’t sound like a good day" she replied "Trust me, it is."

We have to take Lola back. During the last couple of days she has become very protective. We wouldn’t normally see that as a problem actually because we like the thought of a protective dog in our house.

However, Lola seems to prefer to protect Momma the best. Even from the kids. Today she tried to bite Quinn and Quinn was just throwing away a piece of trash in my office. I was able to stop her luckily, but sadly this is a deal breaker. We’ve got to return her to the pound and our plan is to look for another one in the next few weeks.

I’m very sad about this. I’m attached to Lola. But she’s just not the right dog for us. And well, we have to keep Quinn. We’ve got so much invested in her already…

We have a new dog. Lola.

I know, I know. You are thinking "Are you crazy?!" because that is what my friend Carol said to me upon hearing that we have a new dog. But I have my reasons.

Before this past weekend we’d had several conversations about getting a dog. Gage and Quinn have been wanting a dog for a long time. Gage, at least, has been talking about it for a year. We’d let my sister, Terry, take our dog (or we made her) when we moved to this house 2 1/2 years ago for many reasons; the house, Addy’s hips, her ankle problems, our kids are too active, etc. And Addy is very happy at Terry’s house. And really, Terry and her family are very happy with Addy. So when we talked about getting a dog seriously about 3 months ago, we knew Addy wouldn’t be returning to us. Not to mention we pay Dog Support for Addy. It’s only right.

I would say that I am a dog person. I grew up with dogs. They lived with us, slept with us and were a part of the family. Ever since I can remember we had a dog. When I met Julian I had a small dog Cleo (who once saved my life, I mean, seriously saved my life by waking me up from an intruder and allowed me to call the police who found the guy, an alleged rapist from another state with an open warrant for his arrest) who pretty much got to live a charmed life. She lived until she was 14. She was MY first dog. Then when we were newly married, we got Addy. And Addy and Cleo lived largely a nice life together. Addy 60lbs, and Cleo 15lbs. It was an interesting mix but they were happy.

Julian, on the other hand would not be what one would call a dog person. The dogs in his life were mostly service dogs of the hunting variety and were kept outside and traveled on the outside of cars in crates to go on hunting trips. They were not dogs that were considered a part of the family. And so living with Addy and Cleo was a stretch for him. And he’s enjoyed (well, I have too) a dog-free life the past couple of years.

But then we starting thinking about a dog for the kids. Shouldn’t all kids grow up with a pet? And well, we’re not cat people. The discussing commenced.

Over a couple of months I would go on line and look for a small dogs that were kid friendly from a rescue group and I would hope that one would work for us. Julian was still luke warm on the idea with tons of great reasons to NOT have a dog including time, and allergies (we are not really allergic, but Julian didn’t want to introduce anything that could possibly hinder him being in tip top shape for  kidney sharing so he used this term) and impending transplant. I could have gone either way really even though I pictured a small dog romping in our house.

But in an effort to be honest with myself I decided to try to figure out why it was so important to me for the kids to have a dog when we could have clearly chosen not to get one. And it came to me and it was a sad reason. But it was an honest one.

I had figured out the reason I wanted so badly for Gage to have a dog, right now, is because The Year Of The Transplant is upon us. I expect and hope and have faith that we will have a good, safe transplant experience and that Gage will survive. But in the back of my mind I was thinking that if something horrible happened and he died, I really wanted him to have had experienced life with a dog. There. I said it. To the Internets. And to Julian. And when I said it to Julian last week, I was sobbing, and that’s when we both agreed that Death trumps Allergies.

So, let me introduce you to Lola. From the pound. And she’s loving and sweet and the perfect dog for a boy going through a transplant. And for the girl that will some day.

Filled with cautious hope I am.

What is it about the first day of school that makes me want to feel hopeful? The fresh appearance with new shoes, clothes, and backpacks?

It might surprise you to know that the impending transplant wasn’t on my mind this day* but what it was is how Gage will handle the year, educationally and behaviorally. I can only describe Gage has hard. He’s just hard. He requires us to think EVERY SECOND about our reaction and how it will direct him a certain way. Because a particular reaction to something can drive us down a good road. Or a bad road. And on that road we are on we will have speed bumps and car wrecks and detours, or we will have side trips with historic markers to read, and car games to play and pecan rolls.

One week into school and I’m hopeful this will be a decent year for Gage, all things considered. I’m sure Quinn and her flexible-ness will have a stellar year of learning and keeping her hands

to herself. I know its early, but my sanity depends on me believing that we are driving the speed limit passing cows and horses and barns with Rock City painted on them, which make me smile. See…this visualizing thing is working.

*Not much anyway. Okay, that is a lie, lie, LIE.

No more news about the denial of the growth hormone. Labs will be drawn today. And I’m sure Gage’s transplant paper work with our insurance company is whizzing through approvals. We should have it Just. Like. That.

It seems that the children’s hospital has lost our paper work. Lost. Gone. Kaput. MIA.  Last Thursday our NEW paper work was hand-delivered AGAIN to the transplant team. They are at square one, I am 4 weeks into the process.

It will be 2-3 weeks for insurance approval. Because, you know, no appointments without prior approval.

Suffice it to say that Momma. Ain’t. Happy.

I mean these are the people responsible for my son’s well-being for the next couple of years and well, I’m disappointed.

But I am Zen Breathing. Thinking Happy Thoughts. Visualizing Peace. And Visualizing Love. Flowers. And Bunnies Jumping Through Meadows of Dancing Wildflowers in the Breeze.

More later. On this and growth hormone. Insurance has denied the need for the type of drug the Dr. C ordered. And um, labs need to be done on both the kids. But I only got lab orders for Gage. Yeah, another call to get hers. Fun day in Sick Kids Land.

Back to Bunnies Jumping…

Daddy: "Hey Gage, do you want to go to Chuck @ Cheese?" (Germ Infested Play Place)

After a slight pause.

Gage: "You’ll beeeee sorrry."