Oksana

So much has happened that I really don't even know where to start.  I'm learning that advocacy is a full time job.  I'm constantly fielding emails and phone calls, questioning policies, asking questions, and making visits.  Sometimes I am handling big issues and sometimes I am handling little ones.  Let me tell you....the little ones can be just as annoying as the big.  Sometimes I just shake my head.  Here are a few of the things we have dealt with in the last couple of weeks:

- Oksana has been moved to a new teacher and we really like her.  She enjoys going to school again and is toileting more consistently during school.  I'll share more about why we made that change another time.  It wasn't pretty.

- I learned that they were having men bathe Oksana.  After questioning that policy it has been changed. 

- Oksana went so far downhill that I called the psychiatrist convinced that she was catatonic.  She basically got to the point that she would lay on the floor and not move for a very long time.  She wasn't speaking, wasn't eating, was constantly slumped over, etc.  It was bad.  After some bloodwork we learned that her depakote levels are high and she shows sign of a chronic infection.  They suspect she may have had mono which would explain things.  They tested her for it and we will have results next week.

- While we were concerned about catatonia we also made the decision to do some extensive genetic testing.  She will go to the genetics clinic at children's hospital in December.  Every one is convinced that with her level of complexity there has to be more going on than we can see.  We also discussed possible further neruological testing. 

- A few weeks before Halloween we went out and got Oksana a costume.  It was an angel costume.  We went to see her last week and I was so excited to hear about Halloween.  I found out that they lost the dress and made her a pirate.  It's not a huge deal but I paid money for that, I picked it out because I thought it would make her feel special, and how on earth do you lose a big gold glittery dress?!

-We had another big meeting about Oksana with the team who has been helping us since this summer.  We talked about all of the pros and cons of where we are right now.  It was decided that they will extend Oksana's stay another 3 months.  After that I have no idea what will happen.

- We are planning another meeting next week with the residential center and the school to address some concerns (like the fact that we suspect they are feeding her) and make sure we are all on the same page again.

And that's really just the tip of the iceberg.  The good news is that physically she is doing better.  They suspect that if it was mono that she had, she is getting over it because she is perking up again.  We do have a good team of people willing to help us so that is the first step.  Unfortunately communication stinks there but I hope that we can work through that.  I'll try to get some pictures when we see her on Friday.