Today Ash's weight has dropped from 53.11 lbs to 52.15 lbs. :)
Today her bilirubin climbed yet again. It is now at 23.9. :(
Today Ash's lips are blistered. :(
Today it was discovered that her tongue is as yellow as her skin. :(
Today she can't swallow. :(
Today she just drools. :(
Today she refuses even a sip of water. :(
Today we assume her throat must have some of the same blistering as her lips. :(
Today I see the effects her sick and damaged liver is having in areas of her body I never even knew were possible. :(
Today I stare at her face as she sleeps and I still am awed by her beauty. :)
Today I wish to go back in time. Even just a week or two ago so that I might run footage of her every smile, every laugh, every silly antic, every moment of feeling good, and safe, and happy. :(
Today I wonder if we will get this infection under control enough to take her back to our home. :(
Today I began thinking how much I love this gift of ours and I still after all these years can't believe He gave her to us. :)
Today is the day I hope things begin to turn around for the baby gherkin. :)
Today I have been given another opportunity to minister to my youngest daughter and I won't waste the blessing I am being handed. :)
Overall, I think that she looks better today. Maybe its because I cleaned her up a little bit, changed her bedding, gave her new p.j's to rest in? Maybe its because I just so desperately want to see a change in the right direction. I don't know what it is, but to me I think she looks better, stronger, more alive. I'm going to hang on to that.
I really want to get through this acute phase, stabilize her, and take her home. From that point we can have all those "difficult" discussions and nonsense once we are rested. At this time my mind is mush and my heart is shattered. I can't make competent decisions like this. I need some time to get us back home, some quiet moments to speak with her daddy, some evenings to seek direction and pray, to find some peace. All I can focus on right now is now. I can't even think past today. I just can't.
I want Ash's good days back and I don't want to sacrifice even one of them to time spent in hospitals, evaluations, and surgeries. I don't want to do anything until we are absolutely forced into it. I don't want to give up one single solitary minute of her happiness. I think we will know when the time is right. Its not right yet. She still has some more living to do.
Our passports came in the mail yesterday. Our vacation is scheduled for the second week of June. I have no idea if it will come to pass or not, but I'm still focused on taking her to experience a piece of the world that she can enjoy. I cried when I opened those envelopes and realized how close the trip is. My kids need this trip. They need the time away to spend together and make memories. Dave and I need to see them be carefree. We all need this before we allow our world to rest on the shaking ground of transplant again. I just want to give them this time together first.
There is so much I want to do with Ash before its time. I wanted to get her back to the beach. Even if its just one day. I want her to see the ocean again. I want her to be 6. I want to have her birthday party. I'm not ready and I don't think she is either. I just hope and pray that we have more time. We need some more time. 7 months has not been enough. I don't think it will ever be enough.
All I know to do is go with what my instincts are telling me. My gut says no. Not yet. My heart has not come to grips with it yet. I have yet to find peace about it. Until that time then I think we will take her back home and live. We will laugh. We will love on her
Today this is what my heart is saying.