Four

Four...The total number of hours our sweet girl was awake in the last 24.

Its called liver disease. Its ugly. Its awful. Its stealing her from us.

Her direct bili is up to 9.4 today. Indirect is just under 12.

Her enzymes are all in the mid hundred ranges.

We NEED Omegavin and have heard nothing of the compassionate use grant. We are waiting while time is running out.

Today's labs were awful.

Tomorrow she has an appointment in Shreveport.

In the morning I will return a call to transplant.

I found joy today in the smallest of moments. Blake lying next to her tiny, sleeping body on the couch. Her legs stretched across him as she crossed her ankles. A kiss from Allie on her sweet forehead as she slept. An "xmo" from her daddy to her. Tiny hands reaching out to me as they signed "hold me" in the brief moments her eyes opened up tonight. Rocking her as I held her close to my chest and breathed her in. These are all moments I fought so hard to have again. I'm grateful she's home. Grateful we experienced them today. Grateful to God for each of the breaths her lungs took today.

Only four hours today. I'm hoping for more tomorrow.