Stuck

We don't get to leave today and for now it seems as though we are stuck. That is more than difficult for me to swallow. Knowing that I could have held Allie tonight or seen Blake's amazing smile is more than hurtful. I'm sure its all under His control and that this too must be a part of the plan, but it doesn't make my heart hurt any less.

Ash is having a wonderful day and for that I am truly thankful. She is silly and so, so happy. I love this child so much and even on the days when my heart is sad and lonely she puts a smile on my face. I am very grateful to have our baby back. I wish you could hear her giggle or see her play. It is so incredible how well she is doing when I read back just a week or two ago. How she manages to pull this off is beyond me, but I'm happy she does.

Her output remains really high. No explanation. They will be starting a new type of blood pressure med tonight. They want to use the one that causes the kidneys to struggle. Her kidney function is good this week so they think this is a window of opportunity to try it. I'm not sure how I feel about it. All of this is a side effect of the prednisolone she is on. The sooner we can get rid of it the better she will be. They are also adding back the immunosuppresant rapimune to the mix. They would ideally like for her to maintain a level of 5 on each of the immunosuppresant drugs. Once she has managed to build those levels then we may start to wean her off of the steroid which would then allow her blood pressures to return to normal and we would be a lot better off.

I'm not sure how long we will be stuck. It is so hard to sit here when we have already been told it will just be a matter of days until we are outpatient once we transfer. I had so hoped to be decorating the trees with Al this weekend and baking warm cookies for Blake. All of our hearts are sad tonight, but still hopeful knowing we have the ok to go when a spot becomes available. Perhaps tomorrow we will all be together?

Our room is empty and sad looking. Not making it any easier to stay here. We sent all of our toys with Dave and kept only our clothes. We even sent her rug to live at one of our nurses homes until we need it again. Days like this make me want to eat a bag of chocolate. How bout you?