Ashley's Story

She will leave fingerprints all over your heart



We have rewound Ash's recovery from this virus and it looks as though it has not run its course. She is once again tiny, weak, and frail. No smiles or laughter since the middle toward the end of last week. Each day she seems weaker than the day before. We just can't kick this thing. Dave and I are concerned and on the edge of worry, but doing our best not to slip over.

The attempt at bulking her up has back fired if you ask me. She is smaller than ever. Her spine and ribs showing from behind. Picking her up is frightening. You feel every single bone and her body aches to be touched. She hasn't been able to sit up that much the past two days. She whimpers in her sleep and seems tired all the time. She doesn't have enough strength to stand and she isn't able to take any steps even when assisted.

We will be running her monthly labs in the morning(two weeks early) just so we can see if any red flags appear. Her blood sugar is normal. She's had a low grade fever for the last couple of days, but nothing even close to being high enough to ask for blood cultures. I can't for the life of me figure out what is making her feel so ill. My last thought was a possible UTI? She's never had one, doesn't really have any signs, but maybe she has one? I'm just trying to pin point the cause for the low fevers. I'm just not sure.

I can't sleep at night. My thoughts are consumed with Ashley Kate. I pray until I drift off and then wake up trying to remember the last words I prayed. I just don't know why she isn't bouncing back. Something is wrong, but we don't have any idea what it is. Our hearts are heavy for her and the loss of all her hard work over the year is breaking my heart. She was doing so amazing. I really thought she would be walking by her birthday. Now, I know she will not. I would be completely content with just having my silly baby back. The one who scoots all about the house looking for trouble. Smiling all day long and laughing so hard and so loud that I can hear her all the way across our home. That's my heart desire at this time for my sweet Ashley Kate.


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