New normal?

We are still at VSK.

You're defying all advice, and simply refuse to quit.

Now that you're off sedation and don't have a ventilator tube in your face, I can really see the progression of the Rett syndrome.

You're not the same person at all.

Elsie and my parents are staying at our house while we are here. They just come for visits. We're in a kind of limbo.

You could be progressively shutting down, or you might muddle along like this until a lung infection compromises you and knocks you off your perch. Certainly your breathing rates are not normal.

In the next few days we will have to seriously consider bringing you home. VSK say we can stay as long as necessary, but we really need to go home if this is just the new normal.