Ava's still in the hospital where she's continuing to drift between seizing almost continuously, and being too sedated to eat or take her medications by mouth. No one has any new ideas, and Matt and I are discouraged and frustrated with the lack or an apparent path. She is completely incapacitated. She can't develop, respond to us, engage with us or even get comfortable for any length of time.
She's getting rescue meds (fast acting drugs to stop her seizures because they won't stop on their own) multiple times a day. Her head IV is still working, but usually after 3-4 days in the hospital, her IVs quit working because they clot off. So it's likely they'll need a new site soon, and so far, she's been a difficult one to stick. There's been talk about putting in a port, which would be a little reservoir under her skin that would give them constant access to the blood they need to check her med levels, but that doesn't solve the IV problem.
It is terribly stressful to watch our sweet girl suffer and not be able to do anything about it. Ultimately, Ava continues to need a miracle.
The big girls and I are still in California, and we're being loved on and distracted by our amazingly wonderful family. I'll post a few pictures to the blog as I'm able, but wanted to get this out urgently.
Thank you for your prayers.
We hope you had a truly joyful Christmas.