day +340...

The countdown is under thirty days...yes, we are inching ever closer to Camryn's ONE year post-transplant. In transplant world the anniversary of your "day" is called your second birthday...Camryn's second birthday is on 10.20.06 and I guess now she has a third birthday 6.4.09.

Camryn is doing really well, this week we are clinic free with only a home lab draw tomorrow. She is seemingly doing well and her systems seem to be holding their own. The GVH rash is nice a brown...yes, she has a variety of shades on her torso, none of which are truly a "flesh" color. I am thankful that it is pretty much strictly on her torso, because it does help avoid any embarassment that Camryn might feel from it. No word yet on the echo, the appeal is at the insurance so we wait...isn't that life in the medical world? I guess we should come to expect it by now.

As far as medication Camryn is doing well with her transition back to liquid Tacrolimus, and we have figured out a good schedule to do the best we can with the empty stomach restrictions. For adults it is one thing to take meds on an empty stomach, try that with a six-year-old and it can be down right maddening! We are so thankful to have found a compromise, a happy medium where Camryn handles it well and the medication gets taken.

I am also pleased to report that we have officially changed Camryn's medical group and fingers crossed it will help things work more smoothly for Camryn; not only now, but in the future as well. One piece of this whole insurance drama that I have left out is that the plan is usually in place for a child to be followed up with until they turn 18 at which point they would then be considered an adult. It only makes sense to us as far as we can control it for Camryn to be followed up at that same place that her transplants took place...so yes we are twelve years off of 18, how crazy is that? But, in this world we have to anticipate getting there even if it is a crazy, rocky, happy, long road.

Yesterday while chatting with my hygentist cleaning my teeth about Camryn and her variety of mouth/teeth issues I was enlightened to a few things. My hygentist is super, super nice and has been very patient with me while I skipped appointments because my mind was literally elsewhere for a couple years. She was telling me about some of the effects of radiation on people's mouth/teeth and I was amazed. Now, granted I would rather not be talking about radiation at all, but I swallowed hard and realized at some point as much as I hate it I have to embrace the fact that the more I know the better. We also talked about medications and such and she had some eye opening reasons that Camryn's mouth and teeth are a struggle. I left encouraged...plus, I don't go back for four months and for me that is a personal victory!

Life is really moving along nicely and yet at times it feels like there are few moments of peace. It's as if everyday I get home there is a variety of messages from home health, home nurses, home supplies, pharmacies, oh the list never ends. So I usually spent a few moments every afternoon sorting out just exactly what is what in the medical world of Camryn. But, for what it's worth I can't complain too much...Camryn is doing really well and I guess I really would take a million messages any day to keep her well.

Tomorrow I leave for three days for San Francisco, not really on a vacation...I guess you would call it a working vacation. I am preparing to tackle a piece of normal life...a piece that has been removed since I became a mom...

The 8th grade class trip...yes, I teach 8th grade students and I really do love it. I know some people read that and think that I might be insane and I at times I wonder if I am. But, I am heading out with this group of 90+ for a three day adventure in the City by the Bay. I am excited and scared all rolled into one...

I am completely excited to go, to feel a sense that life is stable enough for me to take off for three days and the bottom won't crumble beneath my feet. Oh I know it could, but there isn't anything knowingly on the horizon...knock on wood! :) It will be nice to "feel" maybe a bit of normalcy, something that I would normally be doing. I am excited as it's a opportunity to hang out with the students outside of school and make some connections before they move on to high school. I also get to hang out with a few of my favorite peers and co-workers which just adds to the fun.

I am scared, never been away alone before...I completely know that tears will come as it just isn't the same walking out the door anymore. I used to really enjoy those few moments away and now I hate it...maybe because for so many days I left a hospital room or left my house saying good-bye to one of my children and always my hubby. I just do not like not having one of them with me...just makes me feel that some how the world is amiss. And really this is the way it should be...

If I'm honest I am glad we are going to San Francisco a city I thoroughly enjoy and a place that holds fun memories for me...Jason and I were just there in March. So it'll be fun...but I know I'll be super, super anxious to get home Friday night.

There is a lot rolling around in my head these days...finding myself in disbelief that this time last year we were preparing our hearts for the realities of transplant and all that comes with that. Wrestling with those memories...trying to let go of some and clinging to others.

Plus, I have almost finished the school year...this is a HUGE accomplishment for my heart. I will exhale on June 8th, the day I officially check out for summer...guess in some ways I've held my breath this year, hoping, believing that maybe just maybe we'll make it through a year.

And as of this point we're about 25 days away...