Day +296

The past two weeks have been exhausting in every way and we still don't have a definitive answer, I have come to believe we aren't going to get one.  After our hospital stay we were seen at the SCCA for evaluation and a cortisol test - the thought was that perhaps Georgia's levels were low after being on steroids for so long, her symptoms seemed to match up.  The test required an IV to be placed, a blood draw, an injection of something that causes a "steroid response" then a blood draw an hour later.  Georgia was rightfully upset about being poked again and overall just wanted to be left alone.  That evening we heard that Georgia's levels were normal, I am so thankful that we avoided being put on other steroids to normalize her levels!  It was a good reminder that even though Georgia isn't feeling like herself her body is still doing what it should be.
Friday we had an endoscopy, I resisted this a little but ultimately knew it was the only way to know if this was a GVHD issue in her throat.  We checked in at 7:15am, she had another IV placed and was sedated.  I have always held Georgia while she's sedated, this process only gets harder as she becomes older and can tell us how upset and scared she is, crying mama me (hold me) and mama ba-bye... one of the nurses left the room while the IV was being placed, she told me later that she has grandchildren Georgia's age and was becoming too emotional to watch.
The gastrointerologist came out and let us know that Georgia had done just fine through the procedure and they were able to take biopsies of her stomach.  There were no obvious signs of GVHD but we will have to wait for the pathology results to know for sure. 
While Georgia was sedated it was suggest that we switch sides of her NG tube as to not cause calluses in her throat.  Every night when I hook Georgia up to her feeds I have to check placement of her line, this is done by using a syringe to push air in as I listen through stethoscope for a gurgle in her tummy, then pulling back on the syringe to get some stomach contents.  This is the same method they use after placing a new line, only problem was they emptied Georgia's stomach for this procedure so they weren't getting any return.  They said, we'll just do a quick x-ray to check for placement... I promptly said, no.  This started an almost three hour long process of, was the tube in the right place, what it would take to get a return  and why did I think it was such a big deal to get an x-ray.  In the past year, Georgia has been through more than most people go through in a lifetime, most of it was necessary - this wasn't.  Brian and I both feel strongly about minimizing her exposure to unnecessary medical procedures, doctors visits and without a doubt, any additional radiation.  In the end they had to replace the tube while Georgia was awake then we left for a bit to get her to drink and eat a little, this finally produced the results we wanted without any radiation. 
By last night Georgia seemed better, chatting, playing and doing a little bit of dancing.  Although we have labs next week the hope is we won't be seen by a doctor until the 29th.  We need some time to rest, heal, play and most importantly have a very happy 2nd birthday one week from today.