I really and truly do not know
I sit reading the official pathology report from Monday's biopsy. It took the entire week for them to get it to us. The news is not good.
I really and truly do not know if our sweet Ashley Kate will make it out of here with this bowel. It is not healing. Every week a different area of her bowel is affected. It is raw, damaged, ulcerated, and nearly destroyed in some areas.
I asked the team this morning if they thought her bowel was getting worse. They slowly shook their heads back and forth as if to say they were confused and then answered, " Clinically we think she is getting a little better although the biopsies don't support that. Its just very hard to tell between rejection and the CMV virus. The damage caused by both are very similar so to know for sure what is going on in there is just to difficult to diagnose." The pathologist is struggling with his interpretation also. What does this mean for Ash? It means we continue to guess at the treatment and hope that it will work. To date we have no evidence that it has. It is going to take a "very, very long time to heal this bowel and see how she does. We just have to wait and see." As always those words, "long time" cause my heart to ache.
We are hoping to get dressed today and attempt sitting up in a chair. I think she might have the strength to do it. She is far to weak to even try standing at this time, but she sat well yesterday on the floor so I think she and do the chair today. Baby steps. We are starting all over. Hoping not to lose all that she has gained this year, but knowing that recovery is hard.
As always, our rosy cheeked, tiny, baby girl is more than beautiful. I look at her fragile body and melt each time she looks back at me. She is very, very cuddly today and for these moments I am grateful. Moments where I am allowed to just appreciate the very work of God in my life. This child that I prayed for, dreamed of, and desired so desperately. He handed her to us and I am so very honored. I love her so.
Each morning as the mail is delivered I am reduced to tears by your kindness. The music sent is always beautiful, the books well read, the prizes for Ashley Kate so very thoughtful and appropriate, the bag of "fall" brought a smile to my face and touched my heart. Thank you for gathering these gifts, taking the time send them, and for your love and thoughtfulness. As always your prayers continue to carry me along through the long and lonely days and I am so very grateful for each of you who spend your time with our family here through this journal. We are honored to have you in our lives.