Busy week for the girl... OOH, and...

Sara has been quite the social butterfly this week. She got visits from Daniel and Tim on Tuesday, and then Joseph and Ren on Thursday. She also got moved from a room without a view, to one with a window that looks outside. She's been enjoying looking outside.

I went to the hospital on Wednesday and she and I spent several hours with me talking to her. Then we watched some SpongeBob Squarepants.

Its funny that even though she is non-verbal that she is so communicative. Her eyes are expressive, as is the rest of her face. Tim was right - Sara's real smile is back. It is so nice to see... I told her she doesn't look so dee-dee-dee anymore and she smiled again. I'm so glad she still has that sense of humor.

We talked about a lot of stuff, including her step-mom. She wants to see her and talk with her and I. I am sure some feelings will be cleared up and we can all move forward feeling better.

I got a great phone call yesterday. I may not have shared everything about trying to get Sara an alternative treatment. She did not qualify for the sildenafil citrate study, but is a good candidate for its compassionate use. Unfortunately, Kaiser won't provide the treatment or allow us to have it provided to her while in a Kaiser facility. So, I have been just knitting myself in knots trying to figure out how to get her moved to a facility that would allow it, without jeopardizing her Kaiser care. I've been getting more and more uptight about it, because any benefit the therapy may have on her diminishes the longer we wait to start it. So, time is of the essence for this possible help to her locked-in syndrome. And, I haven't been able to just "let it go" because it could make a significant change in her outcome. So, i've been working to solve that dilemma.

Well, after voicing my frustration and fears to her social worker on Tuesday Gina went to work trying to come up with a solution. That is what the call is about. Apparently, in the eyes of MediCAL, Sara is still a child and elibible for pediatric care. One of the programs will allow us to bring her home, with 24 Hour LVN care! That means she would be at home, with 1 on 1 nursing, her ventilator managed by a nurse. This is absolutely awesome. I voiced my concerns regarding continuing speech and physical therapy during that time, and she's looking into it. BUT, if we can swing this I can bring her home, get her the alternative therapy that could help her, get her friends and social group back into her daily life, get her the standard physical and speech therapy to keep her moving towards intensive stroke rehab. AND, if something happens, she can still go back into a Kaiser hospital. AND, when its time for intensive stroke rehab, she can go back to the world-class Kaiser facility in Vallejo. AND, anything not covered by Kaiser is covered by her MediCAL - except maybe the compassionate-use drugs. I am contacting the manufacturer to see if we can get either a grant of medication for use, or a discounted rate for compassionate use. If not, well, then we'll pay full price and just find a way to make it work.

So, I am excited about the possibility of having my girl home, with the care she needs, and the therapy that could help her recover. I'm terrified about it at the same time. I HAVE to move now and get a place setup to accomodate her and a nurse (and the rest of the family :) ) I have to get a vehicle that I can safely transport her in. ( The neurologist I found that would administer the compassionate use therapy and track her progress for the researchers is in Berkeley... ) And a dozen other things I haven't even thought of...maybe two dozen...

I haven't told her yet, as I don't want to get her hopes up before knowing more...but its going to be hard to keep this from her...even temporarily...