Before she disappears

These are for her daddy. He asked me for pictures today. So he could see her. Before she disappears.

We are in day two of treatment and she has been treated with round one of thymoglobulin and two rounds of pulse steroid. They decided to add the steroid to try and keep the rejection cooled off in between the days we can infuse the thymoglobulin. Its the steroid that will start to make our Ashley disappear. It always dose. It steals from us her tiny features, her beautiful face and her sweet personality. We are aware she's still in there behind the swelling and the rages, but its so very hard not to see this face when we look at her.


Ash is pretty uncomfortable today. Lots of aches and pains. A constant whimpering. We discussed pain control in rounds this morning. Its a tough one to tackle. Apparently rejection of this severity is very painful and we want her to be as comfortable as possible. The difficult part of that is that Ashley's mind needs to be clear so that she can communicate with me. A groggy mind will make it very difficult for her to remember her signs and if she can't sign to me I can't figure out what her wants and needs are. We are going to start with small doses every 4 hours to try and keep her comfortable.

She isn't using her injured hand to sign yet. It looks better this evening, but still its not right. She needs both hands. They are her voice. A little concerning that she hasn't started using it yet.

Thought I'd share something funny with you. Yesterday two nurses were standing at her bedside in yellow isolation gowns. She wouldn't look at them directly but cut her eyes toward them, then looked at me and signed "ducks". So funny I couldn't help but laugh out loud. She's a mess! Just her way of letting me know she's trying to take this all in stride. I love, love, love my girl!