Today was a good day for us.
We got word that Parker has been accepted to the facility in Garches. There is an administrative procedure to go through where we have to meet with them first before he can be transferred out of the hospital. I called immediately and set up an appointment for next Monday. We are trying to work through ways we can advance this.
Parker's first room-mate moved out early this morning. His new room-mate is a girl Hannah's age named Hawa whose family is from Mali. She has night seizures. She has a twin brother, is very energetic but cute. I don't believe that she has stopped talking since we have seen her and she makes typing a little bit difficult. As soon as she was in her bed and forced to lie still for 3 minutes she was asleep.
The doctor from Garches was at Necker in the afternoon and visited Parker. Renee reiterated the fact that we would like to leave sooner rather than later and she told us she would work on it. She was very positive about the progress that he has made already.
They took out the iv line in his right hand this afternoon and he now has full use of both of his hands. They took the bandage off of his head from the shunt surgery-- he has 8 stitches. There is one bandage left on his stomach.
He has two different antibiotics three times a day. He is down to one anti-convulsion medication three times a day-- all taken orally.
The physical therapist works with him for 30 minutes or so a day. The psych-motor therapist, Clemence, worked with Parker today as well. He seems to respond to Clemence and their sessions together-- especially the hammock swinging.
We have gotten the feeling that many other parents content themselves to letting the hospital system do whatever they think is necessary for however long it takes. While we don't pretend to have all of the answers we ask a lot of questions and have tried to make it clear that we want to be involved in the process and our son to come home as soon as possible, even if that means we have to take over some nursing duties. We are repeating this often--- we really do not want to spend another weekend in the hospital.
