We want it back

Its been over a month since Ash has been home. Its been over two months since she walked, played, swam, or rode her bike. Its so very hard to watch her now as she struggles daily to even open her eyes when we have seen her live. Truly live. Dave and I want it back. For her. We want her life back. What she is experiencing now is so foreign to her. Its not even real, it can't be. I wonder what she's thinking? I wonder how confused she is about her circumstances. I wonder a lot of things concerning my sweet Ashley.

Her life is worth fighting for. We've talked about re-transplant. The dangers, the obstacles, the everything. Currently with the information we know I believe that we all would choose to try again. I don't even know how you decide not to try. How do you say, "lets just watch her suffer and die". Transplant is hard. Surviving it is even harder. Re-transplant? One of the hardest things to even consider knowing what we've seen happen to our daughter, but her life has value. She deserves to live. If she can be given that chance then who are we to take it from her?

So many things are going on in Ashley's body. Many of you were concerned about the appearance of her right arm. We are too. Unfortunately there is nothing we can do but wait and see if it will heal. The swelling and the injury is a result of that pic line that was placed last weekend and never worked. She doesn't use the hand for anything. She keeps it protected by covering it up or shielding it with her other hand when people come near it. Her little fingers and toes are sluffing. Kind of like a snake who sheds its skin. Ashley's body as a result of the rejection and the massive swelling that has gone on is sluffing off her skin. Its happened in our past experiences with rejection so I haven't been too concerned about it yet. The new skin will ooze until it heals. Its a messy, uncomfortable experience but not one that will last. Her infection has remained in the largest wound so far and on the skin. We have no evidence at thsi point that it is growing inside the catheter or in her blood stream. The moment that we do see symptoms they will pull this line out leaving us with few options, but its a better option than losing her life from these gram negative rods. She is suppressed to the point that a simple line infection could result in her death. If the line is lost then they will place one in her liver. Risks? Huge. High. So much to consider if we have to do such a thing, but all the while knowing if we don't allow it she will perish.

I want to share with you all a clip of Ashley Kate and her walker. Too say that our strength for this battle renews each time we see clips of who Ash really is and how she really lives life is such an understatement. We love this child. We will stop at nothing as we seek to give her back her quality of life. So tonight we are still praying for a full recovery of this damaged bowel. Enjoy our gherkin and the fruit of her hard, hard work over the past year. Good night.