Day +312

Since finding out that Georgia would be put on Prednisone I have been struggling with, well frankly, being pissed off about almost everything... what she can't do, what we have to do, with how much she understands and has to cry her way through anyway, it all has become much to much.  We have been in this battle for over a year now and I just thought we'd be in a different place by now.  A year ago my pesky optimistic side had me believing we'd be done with immune suppression and starting our new lives, post transplant with a new immune system running on all cylinders, we're not there.
Monday night I didn't sleep, anticipating our appointment at the SCCA the next day.  Since having her new NG placed Friday Georgia wakes up saying "line no, line away" and this continues throughout everyday so I was very motivated to get a taper started, we're done.
I was what I would say politely pushy with the dietitian when I brought up a taper, she said "she'd check with the team"... Well, I said, we've reached a point where we need to be done with this tube, it bothers Georgia a lot and it's time to see what she can do eating wise.  This is a part of this process that is particularly maddening to me... "let me check with the team?"... I would like to think that I still have some control over what happens in our lives, I don't have to call them at every turn to see what I can or cannot do with my daughter - it is highly irritating! 
In the end, the appointment went fine, we've started a taper and the plan is to be done with the NG feeds in a couple of weeks.  I told Georgia that we are working on making her line go away, I said, you need to eat and drink to help make your line go away... she promptly
walked over picked up her cup and took a drink then looked back at me like - ok now?  Such a smart girl.
We are in wait and see mode as far as GVHD is concerned, the goal is that her eating will pick up and that she will continue to gain weight, this will be a sign things are improving.  I talked to the PA today to clarify a few things as Georgia was really upset during our whole appointment - she's become wise to lab draws, doctors visits, all of it which makes this all the harder.  I told the PA how I view GVHD to make sure I was in the right mindset - it's not as if Georgia has a cut and we'll see if it's healed in three months, it has to do with her new systems living in harmony together... what Prednisone is doing is suppressing her T cells, basically telling them to calm down, the hope is that Prednisone will make them calm and keep them calm.  The next step is then to taper the Prednisone and hope that her T cells stay calm and that both her old and new systems can live happily together.  Only time will tell and there is nothing I can do to speed that up.  Everyone has been very clear that three months is the very minimum before a taper would be started.
One other detail that was confirmed is that again, we can't have a live Christmas tree - we still can't have any live plants in our house as there is a risk of mold infections, this risk was increased now that Prednisone is on board.  This won't change until she is off immune suppression all together.  It just makes me sad, these are the little pieces of this process that are reminders there is still a long road ahead.
I am hoping that once the NG tube is gone I will regain some sanity because I won't be up multiple times a night refilling her formula - sleep brings clarity.  I know though that my stress level will be running high for a while, Georgia will have a full work up in January complete a with bone marrow aspirate and biopsy, skin biopsy, dental and eye exam as well as a massive blood draw all to see how her little body is doing one year post transplant. 
We continue to be so thankful for the thoughts and prayers from so many family, friends and strangers.  Please, when you think of Georgia send her healthy thoughts, from her left femur to her gut and to all the blood running through her body.