Ashley's Story

She will leave fingerprints all over your heart



Ash is still spiking fevers. She has been off and on for the last 11 days. Her IV antibiotic will finish up on Wednesday morning. We drew new cultures today. No word yet. I'm hoping nothing new is brewing, but with unexplained fevers you just never know. She's sleeping. I don't see any signs of struggling. Her breathing is quiet. All seems fine except for these fevers and the daily vomiting. I'm just so confused.

Ash has not been "well" for months and months. We've been on this journey for a while now and its different than it ever has been before. All I can figure is that the amount of immunosuppressant drugs she is on is higher than it has ever been. She remains on 3 drugs as opposed to the 1 she was on before her rejection last fall. This is the only thing I can put my finger on when looking for answers. All I can do is guess that her suppressed system is not able to keep her well for more than just a few days at a time.

We have about one "good" day in every 4-5. Friday she looked better. Saturday she was great. So full of energy and personality. Sunday she began to slow. Today has not been good. Now tonight she's running the fever again. I have no idea what tomorrow will be. For now we sit and wait. When her last culture grew out we were notified immediately. It didn't take more than a couple of hours. The one taken the next afternoon in the ER proved to react the exact same way. The one taken two days later was clear. I'm hoping today's culture is clear, but I just don't know.

Enjoying each and every day with Ashley Kate is more important to me now more than ever. I just never know from one minute to the next how she will be feeling. I love to see our sweet baby smiling. I love to see her signing. I love to see her playing. I love her. I love her so very much. When she is feeling bad it breaks my heart. I wish there were something I could do for her. I wish so badly that I could make her body whole, but I can not. I will never be able to. The only thing I know to do is give her every opportunity to live life to the fullest on the days that she is feeling up to it. On the days when she isn't I find myself holding her as tightly as I can praying for more good days to come her way.

This is not an easy life. Its blessed, but not easy. Our hearts break for Ash over and over again and we find ourselves holding on to what we dream for her as tightly as we can. Praying that those dreams for our daughter might some day in some way come true. Until that day we keep loving this sweet girl with everything inside of us and thanking the Father for her life and her presence in ours.

Here's hoping the fever breaks and doesn't come back. Goodnight. Trish


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