You turned 6 today and I can’t believe it. We celebrated with a Breakfast-Come-As-You-Are-Dora-Pajama Party! What fun you had!

Six years ago today I was ecstatic that a girl had joined our family. I was worried about how Gage would handle no longer being center of the universe in the family and I was worried about how I would handle two kids!

I found out a couple of days later that those were the least of our worries for our family. You’d been diagnosed with polycystic kidney disease (ARPKD) and our world changed with the call of an unsympathetic doctor who thought it was appropriate to tell us that news on the phone and not give us any options about what to do next. As it stood, we had no idea what your kidney function was and if you would need a kidney transplant in a month or 10 years. We brought you home in tears and I have the video to prove it.

When I picked up the phone that day and heard the news that you would "need a kidney transplant to survive" and a couple of days later when a pediatrician told us "take her home and love her as long as you have her" I went to a very dark place. I couldn’t imagine my life without you because from the moment you were born I was a different person. Not only because you required different needs than I was prepared for, but because I knew that you would make me a different mother.

You are one of the happiest people I know. You look at life from a fresh perspective and I get to see the world with you. Some of the simplest pleasures I have raising you come from watching you experience life. You are a fun-loving girl, who is not so hung up on what other people think (gee, I hope that lasts). You make the silliest faces. You love to be tickled and you love to giggle. Your laugh is infectious!

You had a rough year between 5 & 6. Gage going on dialysis shook our family and changed your little life drastically. Your birthday party was just about the week we rushed to get a catheter placed and off to the hospital 3x a week I went with Gage. We no longer had leisure time together as mother and daughter. For those three dialysis days a week I barely saw you and at the time it affected you more than I cared to admit. Your frequent telling comments like "I wish I was on dialysis" and "when I get a new kidney" rocked me both with sadness and laughter. What could I say to you?

You’ve learned so much this year! You mostly know and can write the entire alphabet. We are working on sight word recognition right now and I can see your very brain cells growing in front of my eyes. Your school is a magical place where you see children like yourself with different abilities and allows you both the chance to be understood for your qualities and accomplishments and the chance for you to understand how important it is for you to understand others accomplishments within their abilities. You learned how to jump with both feet this year! You and K, your therapist, have been working on that for a very long time. You can pretty much navigate curbs and steps now. This has helped greatly in your ability to keep the rest of your teeth in your mouth!

When I am having a particularly bad time with all that is our life with you and your brother’s special needs, you are what makes me wake up in the morning to do it all again. You love to snuggle and you love my kisses – which I appreciate more than you will ever know. I long for the moments everyday when I can scoop you up into my arms. I believe that your life has brought about a transformation in me that I could have never thought possible. Thank you my Quinny B. I love you from the bottom of my soul.

Love,

Momma

After 30 hours in the hospital (I was only there 18) that sweet baby Tessa was born. It was a long day, but longer for Dad and Mom. When I left the hospital around 2:00 am, Dad was gazing at his beautiful girl with adoration and Mom was resting in recovery. The best I’d seen her look all day.

We all agreed that while a c-section wasn’t the preferred method of delivery, the plan was always to have a safe delivery with mom and baby doing well. So, really, the birth plan was met with the gusto of hard pushing and breathing and focal points…it just turned out differently.

Tessa joined us at 9 lbs 1 oz. (now you have a clue why it was a c-section) and cute as can be. I’m going to delete this post soon (it’s not my baby to show off!), but someone emailed me saying the suspense was eating them up! Sorry Nancy! You were right to demand a recap!

Can’t wait to go see that baby again tomorrow. After a nap. Been running all day and Quinn’s 6th birthday party starts at 8:30am. Don’t ask.

The kidney photos from transplant day.

Jody and Gage both wanted photos of their kidneys. Gage wanted pictures of both the old one and the new one. I’m finally getting around to loading them up. They aren’t the clearest photos because the camera they let us send it wasn’t exactly my Nikon D70, but they are still telling photos.

I’ve put them in the photo album. I had also wanted to show Gage’s belly post surgery shot too, but I don’t want it public. I will post it when Dawn helps me set up this site with a new look and password protected photos.

Gage’s kidney went to UAB for research I’m glad to say. When pathology sent it they cut it up and put it into tubes. It’s crazy, but I have those pictures too!

But the yucky kidney and the lovely, fine-looking kidney are pictured on the side bar (not to state the obvious, but it’s titled Photo Album). Click on and look. Unless you are Tina. Tina, most certainly, you do not want to look.

And Jody. Thanks. Thanks for this photo op. They are the best blurry photos I have ever seen. We love you. And your photographed kidney. Happy 6 months.

Tonight, friends of ours are going to the hospital to have a baby! It’s a scheduled induction because she is HUGE a little large (they think a 9+ pounder) for gestational age. I am going to have the extreme pleasure of being with them when baby girl arrives!

Linda says I tend to be one of the few people that can help her stay calm when she would otherwise not be calm and she wanted me to be there. I’m completely honored that they are letting me share this with them. I joke that I am really there to keep Don alive, because as we know, natural childbirth (she wants to go for it!) can create an environment of such pain that you don’t exactly know what you might say (well, for me it did).

Linda wasn’t sure she’d ever have children until she met her beloved. Then BAM! She thinks this will be her only opportunity to have a biological child and she feels extremely lucky and blessed and blissful. It’s been wonderful to be a part of her transformation from single gal to awaiting mother.

So they are being admitted (after pizza!) at 8:00 tonight and after they settle in and find out what is going on with the timing of the induction I will join them as a 2nd coach for Linda.

How exciting to be part of such an amazing thing. It brings me back.

Push Linda! Push! I can’t wait to meet Sweet Baby Tessa!

Gage: "Mommy! I made you a surprise! Just for you! It’s in your office!"

Me: "Gage it’s beautiful!" (as I put on a paper clip choker with a butterfly paper clip closure)

Gage: "It is a dollar."

Me, handing him a dollar:  "ah…thanks"

Gage: "No, thank you!"

Raising kids with special needs isn’t for sissies.

There is the possibility every single day that a new challenge relating to a special need can send your day in a different direction than you planned.

There is always something to watch. To monitor. Last week and this week it was a med change with extra labs. Extra calls to the team. To the pharmacy. There are clocks to watch in order to set appointments and get to them. There were schedules and fun and lessons and therapy appointments to cancel, change or keep. There were tear soaked cheeks to wipe and comfort to give.

This week there are IEP (Individual Education Plan) concerns and assessments to arrange. Quinn is being assessed for vision functionality (how her OMA impacts her learning and social skills) and Gage for adaptive technology (keyboard). Permission to give, the forms to sign and return. There are impromptu meetings to be had to address concerns. There are so many things to watch. All the time. To make sure everyone is doing what needs to be done to give the best possible chance for health and education for the kids.

And it’s exhausting. Raising a special needs child (or two) requires a willingness to be flexible. If you have a chance to make it all work, you have to be willing to be many things to many people. Even if it is a forced willingness.

A person to see Gage’s qualities and what he can do and help him obtain all the academic ability that is possible with his challenges.

This morning a photo from the Monday session with Gage taking his meds was featured on the Today Show.

Here is a link. They are shown several times during the interview. Daddy was strong-arming Gage a little bit to take his meds. Gage was feeling tired and a little resistant!

Happy Friday!

When we ran into the doc and coordinator on Tuesday while we were getting Gage’s labs done I whispered that Gage didn’t know that the Rapamune was causing the ulcers. It would not have been a great idea to tell Gage that and give him a reason to fight us on the med. Just no reason. When the doc said that we might have to get off Rapamune because of the ulcers I’d made a cutting the throat gesture to him…and he said "well, from R back to P."

So that is where we are. We’re to double up on the Prograf and Rapamune for the next 24 hours then pull him off Rapamune in two days. We might try it again in the future, but for now, no R.

I’m relieved. There is a twinge of fear (isn’t there always some of that though?), since Prograf over the long haul can be nephrotoxic. Because, don’t you know, TOXIC and NEPHRO aren’t great words when they go together. Or maybe toxins aren’t ever good for our family.

One of the transplant coordinators called early this morning to tell me that Gage’s Rapamune level is low. This is not great news. We were hoping to go down on the dose, but that is now not possible. She said she’d call me back after speaking with one of the doctors. I’m not sure what the options are now, but something has to be done. Back to Prograf? I have no idea.

All I know is that Gage has quit eating food with any regularity because of the ulcers in his mouth. He’s essentially moved himself to a liquid diet. He is beginning to lose some weight. This is not good.