She's happy again. Look at that smile and those eyes. NOTHING else matters to us. NOTHING.
This is what we have spent her life fighting for. This is why we will keep fighting. Through virus, rejection, explant, liver disease, re-eval, organ waiting list, re-transplant, and whatever that brings with it.
Our sweet Ashley Kate is here today, she's home, and she's happy. She loves her home, her family, her life, and her "dinosaur"(don't tell her its a dragon, she's convinced its her dinosaur). If Dave and I accomplish nothing else in this life it will be enough for us to know that she was happy and that we were able to see to it that her days at home afforded her that much. We love her so, so much. So much more than words have the ability to say. I hold her each day, I listen to her giggles, I kiss those cheeks, and I thank God for another day with Ash. He is good, and we are so blessed.
We are still waiting for financial approval from the insurance company before our evaluation can be scheduled. The main goal of eval this time around is completing another vascular study above her diaphragm. Looking for possible central line access in order to transplant her again. Then we will be told if the team will try again. If she were to be listed this week on the waiting list she would have a PELD score of 32. Its a pretty high number meaning she would be closer to the top of the list. The good news about this time around is she's bigger and her O+blood type is a common one so the possible donor organs that would fit into her body and that would be a match for her could be easier to come by. The bad news is that she's bigger and her blood type is O+ meaning that there could be a lot more candidates waiting for those same organs. UGH! Its all so frustrating.
This morning I was reading and came across Peter's words that reminded us all that a day is like a thousand days and thousand days is like a day with the Lord. His time table is not the same as ours and for some reason it gave me hope. What may seem like a long wait for us if she is ever re-listed may in actuality not be so long. Its in HIS time, not ours and that tells me it will be perfect timing. Its stuck with me all day long as I watched her play and then watched her rest. He's got it under control even if He decided not to share all the details with me. That makes it all ok. Not easy, but ok.
So for today, while we wait, she's happy again and that makes this mommy and daddy happy too. Goodnight and God bless. Trish