Status quo

Just a quick update to say that not much has changed. No new seizures. Some good days and some very bad days. Today, she seemed ill. Not just pain and nausea, although they were there, but just felt worse.

Her central line and g-tube sites were each a little red, leading me to question some sort of infection somewhere. Her white count was 3.8 Monday, which is up a little for her.

We still struggle each day with what to do with Abby. As soon as we think we know, she does something different. Last week, she was so sick that I thought surely we should let the poor girl go. This week she's been perkier and has such a strong will to live that we think surely she'll hang on. Then today she was concerning again.

Our hospice nurse says this is very typical with children, and their parents. Kids have good days and mom and dad think they'll be alright. They have bad days and we think it's the end. Truthfully, it is what it is. No words can express what it's like to go through this minute to minute. Every day is hard, and each day we are thankful to be living it.

Sometimes I lay her down at night and press my face as close to hers as possible. Cheek to cheek, I hold her and feel her warm skin and listen to her breathe, and know that in that tight, sweet space, God lives. He is there, holding us both. He loves Abby, and I have another day to say I trust Him with her.