This post is brilliant. If you are a new mother, grandmother, old mother, or want to be a mother read this. Heck, if you know a mother, read this post at This Woman’s Work.

PD#1 has a date for the 2 day evaluation. It’s February 12-13. She will have tests on her heart, a scan for her kidney workings, a stress test, and also a psychologist evaluation. In addition, she’ll have 24 hour BP monitoring. I know, that sounds like such fun. Yep, she loves my boy, she does.

Essentially the physical tests are being performed to make sure she is healthy enough to donate. The team wants to make sure that she doesn’t have anything that might compromise her kidney function.

And just for a kidney fact; did you know that if you donate a kidney as a live donor and if you ever need a kidney transplant you get special consideration (points) if you ever go on the list. 

We’re to know about 2 weeks after that if she is able to donate a kidney to Gage. If she’s approved we’d most likely be scheduled for a transplant within the next 4 weeks. I’m almost to afraid to hope.

Technically it’s still Friday. Some great client work got in the way of uploading a photo for your Friday viewing pleasure.

I present my Quinn. She’s come a long way.

In this photo she is just shy of her 2nd birthday and we are enjoying a day at the pool. Often Quinn would garner attention from people. Adults would stare with their eyes full of pity and children would question why she had a walker. From the very second she started using this walker she was proud. Proud to be upright with her peers and proud to be mobile.

Quinn never minded the attention the walker would get her. In fact, on most occasions we found her charming people with her sunny outlook and big eyes that showed pure joy. The joy was streaming from our 2 year old who, after a long time with a typical 2 year old mind in a less than one year old body, was finally moving. Moving like she had wanted to for so long.

It would be another 6 months of using this walker. One day in the afternoon sun at a park for our church’s easter celebration and egg hunt she had decided that the walker was a nuisance. She hit a bump in the grass and let go of the walker. She let go and started walking towards a new life.

She’s a marvel to behold. From developmentally delayed to yellow belt karate girl. I’m still in awe of her accomplishments.

We’re told the PD#1 passed her urine test. We were told two weeks to schedule the 2 day evaluation if all looked go on the urine front. Tomorrow the coordinator is to schedule her 2 day evaluation. We’re already one week ahead. What about that?

I suspect that won’t last long.

Just keeping expectations low people. It works better for all of us that way. Okay everyone say it with me…low expectations.

We got to celebrate Quinn’s entry into karate yellow belt world over pancakes last night. She worked extremely hard and we’re so proud of her. Especially when you consider that she moves about 2-3 seconds behind everyone else for just about every move that makes up karate. Julian practiced with her every day and she prevailed. I should also insert here that Sensi is about as patient a man as you have ever seen and he looks at Quinn like he appreciates her effort and tenacity. Because you have to appreciate the girl with vision problems when you see her run in a group line where they tag the edge of the mat and run back and forth…now remember when I said she is a tad behind everyone else? Picture our Miss Quinn having about 15 kids running towards her. I swear sometimes she just shuts her eyes. Yeah.

I have a picture of Gage behind her just smiling a proud big brother smile and it’s just about The. Cutest. Thing. Ever.

That’s my girl. A yellow belt. We’re acting normal…once again.

I’ve been saying for a long time that I needed to make sure I have a creative outlet. I’m happier when I am doing something creative. Even sewing or scrapbooking. My trip to the Bahamas was a good reminder that I need a creative outlet.

With that being said, I’ve "joined" (loosely used) a group of women I have never met and committed myself create something every month - they call it Get Your Craft On. Every month there will be a theme. January’s theme is a Bag…so I have made a little clutch with a strap out of some sunflower fabric that I love and have had for a long time. It looks much larger hanging, and in addition to a clutch would probably be fine for a pack of wet wipes and a couple of diapers with the strap for the handle of a stroller.

Of course, I could be doing this to avoid some other posts I am having trouble with.

Deciding to become a potential living donor was easy for me. My husband and children said "what are you waiting for?" when I suggested one night at dinner that AI submit an application to be considered as a kidney transplant candidate. Giving life to a  sweet innocent boy who has a wonderful and loving family is just the right thing to do. So to hear people’s reactions when I say that I’m a PD#1 for a non-family member haven’t been what I would have thought. Most people say…

"Are you really?"

"What did your mom say about it?"

"Really?"

"What about you? What if something happens to you?"

"Boy, I couldn’t do that."

It’s not that I was expecting confetti and congratulations, mind you. But it is totally opposite of what I imagined. I just don’t think I’m really that odd to offer this spare organ in my body which will prolong someone else’s life. What’s so hard to grasp about?? Especially since I have been blessed with two healthy children of my own, who I take to the doctor once maybe twice a year for sinus infections or yearly check ups. And not to mention the fact that I have been a "Kidneys & Eyes" website addict since the initial postings, learning about the problems/issues that parents of special needs children face each day and understanding how truly blessed I am.

And so now, I’m waiting on a phone call to set up my first appointment for additional lab work. It was over a week ago that the hospital said that they’d be calling me back to set up this appointment…and I’m still waiting. I’ve already called and left two messages with the lab coordinator - still nothing. Don’t they understand it’s Gage’s quality of life we’re talking about here? Guess I need to start leaning about Zen breathing and jumping bunnies…

Note from Julia: I understand from today’s update there is a delay in scheduling the first appointment for PD#1 because of "insurance verification" and someone is going to check into that. PD#1 should be commended (I mean besides offering a kidney) for staying on those transplant coordinators. I thank her. She’s a girl after my own heart for her tenacity. I heart her for trying to push this all through.

Update from today: Apparently PD#1 gets to do the urine collection over the weekend which is the first phycial step once you agree to go forward. Because carrying around a jug o’pee is so much fun, no? And then Monday she gets to give more blood, for which smelly (I think she meant smelling) salts will be used because she’s a little queasy with the needles…and she still wants to donate a kidney!

Even before last night when Gage got his yellow belt in karate yellow was his favorite color. And everyone knows it. Which is why it drives his speech therapist crazy that he sometimes says "lellow" but he’s getting better every day about saying it properly all the time.

We’re very proud of Gage for getting to a yellow belt. This is a big deal for any child, but in particular for Gage because he’s been unable to follow through with any kind of sport or activity for the long term because of his health. Soccer was too exhausting and hot. Swimming had to be stopped because he can’t get his catheter wet. No rugby because it’s a contact sport (I just threw that in for my sister Tammy and our very most excellent more like a family member than a nanny Kate).

In this picture the kids behind Gage are about to beat on the floor when Gage’s Sensi (Teacher) ceremoniously removes the white belt and replaces it with the yellow belt.

This is a huge accomplishment for Gage. And for us. For a short moment in time all four of us really felt like things were normal. There’s beauty and sadness in that statement.

Man it is hard to get going again on writing. Since the Bahamas I’ve been stuck on a couple of entries I’ve been working on. I’m still trying to process them as well as decide if I should post them at all. I’m also having trouble getting caught up with work and that has led to less writing as well even though there are many ideas swirling around in my head for posts.

I swear, by next week, I’ll be back to regular posting. I have to be because I have to share some other thoughts and I have many questions. Like…why must it take months to go through testing to donate an organ to someone? Why isn’t there a fitness room at every Children’s Hospital? Why aren’t there parent-to-parent liaisons available through children’s hospital to break in the parents that are new to the system? I need to write Gage’s 8th Birthday Letter. I must finish a post I’ve had some trouble with…

Okay, by next week, hopefully, perhaps and if all goes well, most likely, I’ll be back to regular posting.

Quinn’s school is allowing a dance company to come in and teach ballet classes and Quinn starts today. I decided to sign her up because she had such a fun time at her holiday performance in a tutu…and let’s face it: It’s All About The Tutu. Am I right?

Quinn has a balance issue as a result of the vision disorder the kids have (ocular motor apraxia) so this will either be a good thing (she has fun and it helps her visual coping skills) or a bad thing (she falls and looses another tooth!).