Its after 4am and my 4 year old just received her scheduled does of dilloted and lortab. I find that unreal. This is not normal. Even still the pain is so evident on her face. Those eyes and that nose scrunched up as tightly as she can. I have no idea what my daughter is going through. She can't tell me. All I know is that i haven't seen peace come across her face in weeks. My sweet smiley, twinkly baby is experiencing more physical pain than I have ever known in my lifetime. How is that right? Somebody please explain to me what makes this ok? If only she could understand what is going on inside of her and know that we are trying desperately to help her as she hurts. Unfortunately my sweet 4 year old has no understanding and her mind can't comprehend why her life went from so wonderful to this miserable. I think that is something that hurts so very, very much. She just has no understanding.

Ash hasn't signed in many, many days. There is no communication, no any thing between her and our world. She is silent. Except for the occasions that she hurts so very much she cries out. She is speaking to me though. Her eyes. When I get to peek at them tell me how hurt she is. How confused. How awful this experience is getting.

Dave and I are struggling to come to grips with this. We can't really talk. Not over the phone. There is so much to say. So much not to say. Its awful. If we really are finished with treatment and there is nothing to be done other than wait his questions become "why can't we wait with her at home?" I'm not sure why we can't. We of course would have to have pain management for our baby, but why not let her sleep her days away in her own bed and then travel back and forth for biopsies? I mean, once her cells begin to recover and her blood becomes more stable. I know its just a dream that will never be reality, but our desire to be together, the five of us, is so great during this time. Without God's healing in her body our days with Ash are numbered and each tick of the clock steals moments of her lifetime away from us. I don't want Blake and Allie to miss out on her presence. I don't want her daddy to come home and have to lie in the floor of her rooms just to feel her. I know this is going to miserable. It already is, but I want to be together so we are all ministering to our sweet Ashley.

The plan for now is to support her. We check her blood work every day to see what systems are struggling and where she needs help to keep going. Its just management at this time in the hopes of keeping her here for a long enough period of time to see if she will heal. Yesterday I was told it could be 5 or 6 weeks before we know if she is going to make any progress toward the regeneration of her bowel. My hope is that the side effects from the treatments will improve and become less and less, giving her the opportunity to at least feel a little more normal.

I'm trying so hard to pull off a birthday party for our sweet baby girl. Its something we desperately want to happen for her. We need this. More for ourselves and our Allie than anything. I need to know that we celebrated her life. Every day of her life, every moment, every milestone. 5 years is a milestone although it turned miserable for her. I'm still trying to figure out a catering of some type, table center pieces, helium tank rental, and a few other things. I'm needing to have invitations printed as soon as possible so that I can invite those who live and work here. I'm not sure how much of my family is coming, but I'm hopeful they will all be able to attend just in case they don't have another opportunity to see her. There is so much pain in saying (or I guess typing those words) aloud. To think this may be the last birthday party I ever plan for our baby is beyond what my head can wrap itself around. 5 is not enough. It is not. I don't want to regret not celebrating this year even though there is so much pain involved in doing it. I want to look back and see that I did my very best to make her life amazing and magical and so very special. We need to do this. We don't have a choice. So tomorrow I will continue searching by Internet and doing the best that I can to pull this together while sitting here in my little recliner. It will all come together some how. It just will.

I guess I should try and get some sleep, but it won't be long before they come searching for veins to draw blood from my girl. I hate this for her. HATE this!