Looking Up

Here she is enjoying her Christmas decorations. She just keeps looking up. I'm trying to learn this lesson from her this morning.

We have bad news, good news, and a possibility(although it is a stretch) of great news.

The bad news. She is in ongoing rejection.

The good news. She looks AMAZING and the whole team agrees that they have never seen her look so good.

The great news. If she can accomplish the VERY high and almost unrealistic goals of this surgeon then he said he is supportive of us being able to carry out our holiday plans. "It is dependant on her. How well is she going to do? If she doesn't do as well as I'd like to see her do then we will have to continue more aggressive treatments, and that would require her to stay here. Sorry."

So, I'm hopeful but still on the verge of falling apart. He didn't say no, but he didn't say go. Like I said I'm trying to follow Ash's example this morning and just keep looking up. I can't take my eyes off of the ONE, the only ONE who can make this happen for her and for us. Still I'm shaking and the tears are stinging my eyes. I so desperately want to take this trip with our children and all be together for Christmas. I really, really do.

Currently the plan is to take it slow in the treatment department, but push, push, push her gut to adapt to full feeds by Monday. I'm not sure I agree with either of these things, but its not me that gets to decide. We are not going to treat her rejection with anything other than running HIGH immunosupressant levels. He is hoping to cool off the ongoing rejection in this manner. At the same time he said she HAD to be on full feeds and maintaining normal stool ranges to be allowed to go. I am so nervous about not being aggressive against this rejection. I'm thankful for Ash's sake at the present time because treatment is miserable, but frightened it may not do the trick. I am doubtful that she can advance 20more ccs an hour so quickly. I have never seen it happen in this child. Especially while she is in ongoing rejection. Slow and steady is how we've come this far and I am afraid if we push her the output is going to jump and then the surgeon will say, "no go".

So there are many, many things to pray specifically over. First and foremost the rejection. We need this bowel to stop rejecting so that it can heal and she can get well. Secondly, the treatment or lack of. It has to work or we will be spending Christmas here alone and in ongoing treatment which will make for the most miserable holiday for our sweet Ashley. Thirdly, feed advancement and stool output. They want to get her to 80ccs by Friday and then see her maintain it till Monday. This is going to be the toughest area of all for Ash. Lastly, our spirits. They are encouraged at this time, but still shakey. I just don't know if its going to happen.