Tomorrow Gage has an early appointment - 8:20 for labs and clinic visit. The appointment is at 8:20. Julian is traveling and so that means an early day for all as I have to take Quinny B. to a neighbor’s house at 7:20 so they can take her to school for me.

Then when I get Gage back to school, I am having lunch with Quinny for Thanksgiving. Then I need to work until 2:30 (I haven’t yet figured out how to pack 4 hours of work into 2), pick them up, then work at home while they chill for a bit. Tomorrow night Grandpa is taking Gage to cub scouts and the girl and I will be just staying in for the evening.

I detest mornings. The thing is, Gage needs labs early enough for them to do a prograf level on him so we go without him taking the prograf and he takes it after the lab draw. He is not looking forward to tomorrow because of this.

I had to arrange a courier to pick up 2 new meds for Quinn (what? is that 11 now or 12?) and one of them is EPO injections. Ugh. The girl is also not looking forward to it. It’s been about 2 years since I’ve had to give injections with a needle (when Gage went on dialysis the put it in his cath, and his growth hormone was injected by a cool, painless thingy) and I am not looking forward to it either. There is no way to prepare her for the fact that Momma is causing pain. On purpose.

And to top it off I have to get up at 6:00am. I am not a fan of 6:00am. Ever. We don’t get along, 6:00am and I. We like to stay at least an hour, preferably 2 hours apart for the best outcome.

There. That is my 19th post this month, so I am officially blogging everyday for Noblowhatever. That’s all it’s going to be too. Because I have to go to sleep. Right now.

A social worker a couple of years ago told me this. I had expressed some uneasiness at accepting the wish from the Make-A-Wish Foundation for Gage. I remember thinking to myself at the time that this was for really, really sick kids…kids that could die.

When Gage went on dialysis we met with the social worker who went over all of the services that were available to us and she said that Gage was eligible for a wish to be granted. She said the people at Make-A-Wish would get in contact with us. They did, and we decided at the time that we couldn’t travel because of Gage’s dialysis and so we put off thinking about the wish. We knew then he’d wanted to see the Statue of Liberty and the Empire State Building and we thought we could do it during winter (for the fun), and then the Macy’s Thanksgiving Day Parade came up and well, that is what we settled on. Then last summer by the time we thought about NY and the Macy’s Day Parade it was too late to plan it, the flights (blackout days) weren’t working with our work schedule and so we put it off. We never told Gage.

Then around May or June I thought about it again, I called the Make-A-Wish and made contact with someone, who told me our volunteers were AWOL and we’d be working direct (usually there is a volunteer go-between). And so, Mary Kate has been planning our trip for a few months. She’s been working with the NY office. We learned that a company wanted to sponsor the trip - The Bowne Company.

The sponsoring companies of wishes sometimes like to have a send off party or such for the recipients and such is the case for us. I told Mary Kate that she needed to be warned that Gage isn’t likely to be engaging or outspoken. She asked if there was anything they could do to make him feel more comfortable and I said, get him an Indiana Jones action figure for 5 bucks. That might do it.

She called back with a date and news that someone in the company also likes Indy movies and they were planning a themed scavenger hunt. Gage is mightily excited about that!

Anyway, this trip isn’t about me. It’s about Gage. Gage getting to select something he wanted to do and then someone taking care of that wish. This isn’t a trip we would take. It just isn’t. We have a week off during summer and we hit the beach. We have the week off between Christmas and New Year and we stay at home. We go to the PKD Convention and when the kids come, I can’t say it’s a true vacation (with the exception of Disney) but it is important because they get to meet kids just like them.

So this trip? Is about Gage. And it’s been amazing to watch him be excited about something that is just for him. You should have seen his face yesterday when I told him we had very special “VIP” tickets to grandstand seating at the Macy’s Day Parade. Seriously.

It will be a priviledge to be there to watch him.

Today we got our itinerary from the Make-A-Wish Foundation and plans are big for Gage and his trip! Of course, we’ll all benefit from Gage’s trip!

Just some of the fun…ice skating, the empire state building, statue of liberty, natural history museum, lion king. Of course, the room they have booked for us in one king bed room with no fridge (for meds) so we are looking into that. And on the night of lion king (8pm) we have to be up at 6am the next morning! Problematic for Quinn! The rest of us would be okay. But not my kidney failure, anemic kiddo!

The people at Make-A-Wish have been spectacular! We love them!

This Friday we get to attend a send off party at the company that is sponsoring us! Such fun.

Dr. Wonderful once used that to describe Quinn during a presentation/conversation with a small group of parents of kids with PKD. I was in the room and it was fine with me for Dr. W to talk about our kids; so she did so with my permission. It’s (usually) an endearing term used in the south, like “Oh that Quinn, she’s such a mess that it’s adorable!” It was on this day and Dr. W and I had a moment, where I knew exactly what she meant.

Quinn is in fact a mess. And she is still adorable, in spite of her being a mess. Quinn is missing a few teeth. This is something that I need to get her into the dentist SOON for because she needs x-rays and possibly something done to cut the gum to the let the teeth out. Ouch.

She’s got a mole that concerns the dermatologist and needs to be removed, especially before she is immune suppressed. She walks and runs a little funny. Her hair is unusually thick and she doesn’t like it brushed; so her hair often looks messy. She has some speech issues. You can still understand her, but she does have some challenges with R, W, and some other vowel combinations. She can’t really button or snap yet, so she wears leggings or pull on kind of pants and when she pulls them up on her own, she often pulls them sideways so the seam in the back is always askew and highwaisted. She wears a little bit of breakfast, lunch dinner and snacks on her shirt and her cheek, everyday. She doesn’t really understand what a joke is, but she does like to tell “jokes” nightly at the dinner table.

But oh, to hear her laugh and see her smile and enthusiasm for life and learning. I can’t imagine her any other way. Except maybe with a new kidney.

Dr. Kind called tonight from home to tell me that Quinn’s labs from this week indicate the need for a couple more meds.

For starter she’s going to be on EPO shots. We’ve been waiting for her numbers to drop below the insurance approved number and walla! This week was it. We’ve been wanting this for her for a while because it should increase her energy level. She’s mighty tired right now and long days prove to be difficult for her. She’s often a little crabby (well, that could just be Quinn!) so I know that would be a nice side effect of the drug - the crabbiness going away because she will feel better. She’s also going to start bicitra which is an active vitamin D.

She’s not thrilled with this plan, obviously.

The thing about helping kiddos get used to the idea of shots is that there’s no great way to present it to them. It won’t make it easier or harder knowing before. Because to them, it’s just another needle. Another violation against them. A personal attack. While we can explain over and over that it’s for their own good, there’s no way to get that buy in from them. And Quinn witnessed me/us holding Gage down to give him his shots and a lot of time over the 2 years or so were pretty dramatic. She tends to be pursuaded a little bit more easily, so maybe that will play in our favor.

My girl. Even though we’ve told her it is coming, she’s not going to see it coming. Not really. That makes me sad for her.

Does anyone else feel like we just went through this?

Some time ago, before the Zoloft kicked in Gage and Quinn got on a spy kick. This was probably the first time in 3 or 4 months that Gage wanted to go outside and so I helped them with flashlights, hats, sunglasses, maps and treats in backpacks. For a couple of hours they played in closests and outside around the corners of the house doing spy operations.

I’d forgotten that there was a period of time that even when Gage was having an okay time he was still unhappy. And such is the time in this photo.

Jen from mimiboo.net made Gage’s hat. Which Gage loves. Especially when he is a spy.

Gage had another great day!  I look forward to his class because he cracks me up!  He is a really funny guy.  I was talking with (his teacher) and she says the same thing.  He is doing so well and we are all so very proud of him.

This note came to into my email this morning from Gage’s P.E. teacher. I was leaving an appointment and I forwarded it to Julian on the blackberry. When I got to work Julian said, “I’m always so nervous when there is a forwarded note with the subject line GAGE in it. I could get used to notes like these.”

That had me thinking that part of being an involved parent for a behaviorally and academically challenged kid in school is hearing everything from everyone. It could be by email, call, in person during pick-up, and his planner. Nearly every single day up until about 2 weeks ago there was a message of some sort about all the bad situations Gage was creating at school. Be it shutting down, being disruptive, hitting, or general lack of any regard for school that wasn’t hatred.

This is hard to do for an extended period of time. Because on top of the way he is handling school you can surely imagine home life isn’t too grand either. We were so conditioned to hearing about bad things he’d done that we are still getting used to hearing all the praise.

Part of an educator’s job is letting a parent know the good things too - with the same veracity that all the negative feedback came. Because that positive feedback goes a long way with a parent and the child. I can honestly say, without reservation, that Gage’s school is as thrilled at his progress as we are and they are sharing it with us every chance they get.

Many people that have been involved in helping Gage with this latest crisis and his clinical depression, PTSD and associated issues. Teachers, principals, doctors, nurses, therapists, and us.

Gage can’t go without credit - he’s endured new meds, new symptoms, some 25+ additional appointments on top of an already grueling appointment schedule. I think he’s starting to feel proud about his progress.

It’s not over by a long shot, but for today, we’re all celebrating. All 17 people directly linked to his successes right now.

Quinn’s transplant evaluation is scheduled. We go in a few weeks for the day long appointment where we talk to all of the departments related to a kidney transplant.

It starts at 7:30. In the morning! I just don’t think that is right. Not on any level. Mostly because I stay up very late (or early) and I like to see the clock say 7something before I get up. It’s a mental thing. I get that.

Quinn and I were talking today about the appointment and this is the conversation…

Me: “Quinn, you know we’re about to go to the hospital, you know, where Gage’s dialysis was, and go and talk about a kidney transplant for you. Are you scared?

Quinn: “I am not so scared…but I am…I am something, but what is the word? The word is not worried.”

Me: “Nervous? Are you nervous?”

Quinn: “Yes! That’s it! I am a little bit nervous.”

Me: “You know you can tell me anything you are thinking about your transplant, good or bad. And you can ask me anything and I will tell you the truth. You can trust me.”

Quinn: “Ooooo I have a question! How do they close up the place where they put my kidney?”

Me: “Glue. Remember Gage’s tummy after his transplant? Do you remember the glue?”

Quinn: “Oh yeah. I remember it looked verrrrry, verrrry weird.”

Back in the Summer of 2006 when Gage’s kidney function was depleting at a rate faster than we knew, he begged for a dog. When I say “begged” I mean daily he really, really, badly, “because mommy all kids have a dog,” begged for a dog.

I grew up with (indoor) family dogs and I see the attraction when you are 7 years old. He went on for months. My dog was not really a family dog since she really only loved me. I had to put her to sleep when she was 13 and Gage was 3. He remembers her snapping at her fingers, but that didn’t stop him from messing with her. That would be a lot like REAL LIFE with Gage. He will bug the crap out of you on something and he just won’t stop. He’s relentless that way. We also had another dog that Julian and I picked out together and when we moved to this house 4 years ago (Gage was 5, Quinn nearly 3) my sister became her foster mom when we were selling our old house, and then she was happy, and then we had steps and she was old and she lived out the rest of her life with my sister. Addy had two moms, me and my sister, Terry. We had to put her to sleep the day that we learned Gage would need emergency surgery to place a catheter and dialysis 3 days later. My head was spinning and Addy had a tumor and I didn’t have the fight in me for an 11 year old dog who lived a good, well-loved life.

I bring this all up because Julian was not raised with (indoor) family dogs. The “family” dogs lived in pens and had a purpose. Hunting. No good at hunting, no doggy. So when I approached Julian about wanting a dog when Gage was approaching a transplant (we didn’t know he was mere weeks away from dailysis) he was not keen on the idea. We went around about it for a few weeks, I think. I didn’t know why really, until I did some soul-searching why it was so important for me that we get a dog at the very start of the Insanity Known as The Year of The Transplant.

One night before bed I confessed to Julian I had realized that if Gage died from the transplant complications I wanted him to have experienced a dog. He declared “Game Over” and the next weekend we were dog shopping at the Atlanta Humane Society. We had a miss with one dog who bit Quinn, and then we ended up with the best dog ever - 6 year old Lucy. We love her dearly, but she is with the family because of my fear of my child dying. Without him knowing the reason why (duh) I was granting him that one wish. It was worth it at the time and still today.

Lately, Quinn has been talking about wanting to get her ears pierced.

So, yeah. We are so letting her get them done. I can’t let her go into life-saving surgery without some jewelry.

Clearly, I am not a homeschooling Momma. You know this because my kids are in public school and I worship the ground all teachers walk on. Once, for about 3 seconds, I thought about homeschooling these kids and then I came to my senses.

Dawn and I were talking about this this other day, and then she wrote this huge post about why she homeschools and she made a point to say she wasn’t being defensive and all about our talk and well, she’s such a talented writer that even if she were defensive, you would never know it because she is amazing that way.

Here’s the deal. I can’t homeschool. Even if I wanted to I don’t think I could do it. I bet there are homeschooling moms thinking I could because I seem organized, tenacious with the kids’ maze of healthcare and I juggle a lot. But I don’t have THAT in me. I don’t have the temperament for it. It absolutely would not be in Gage and Quinn’s best interest to homeschool them.

I actually think, that if I had it in me (and you get that I don’t, right?), I might be able to homeschool Quinn. She’s a slow learner because of her special needs, but she generally likes to learn and while it takes a while for her to retain what she learns, she does eventually get it.

Gage is another story altogether. He is a challenging child to educate on the best of days. I am not even kidding when I tell you that it takes 7 people to educate his basic academics. Seven. That doesn’t include arts, music, P.E. or the principal and assistant principal. The 7 educators have probably more than 80 years of combined experience and I can’t compete with their knowledge. I can’t offer them what they can. I can’t be 7 people.

While I was talking to Dawn the discussion turned to Gage’s unique special needs (I realize that I am using unique and special in the description). And I questioned if a parent without formal education training would be able to teach him at home adequately. In addition, I questioned if Gage would be able to get what he needs socially. One day Gage will have to make it in the world with rules and structure and authority (besides us parents) and I think the experience of school will help this.

I’ve been reading Dawn long enough to know the benefits of homeschooling, but I’m here to tell you that there is no way Gage could flourish in that environment. This makes me wonder how parents of special needs do it. I wonder if their kids get everything they could, say from 80 years of experience and seven people.

I can’t imagine how I’d be able to give the kids what these wonderful educators are able to give them. I like to think of myself as the educator of laughter and fun and the fighter for self-esteem, good medical care and blissful memories of childhood for kids with uncertain futures. And I’m the advocate of education. I think that’s enough.