Question

I got asked a question that I wanted to address.  The question was whether or not Oksana understands what is happening to her.  The answer is yes and no.  Obviously she notices that she can't do things that she could a year ago.  She kept hearing us saying the words neurodegenerative disease and asked what that means.  I explained to her that it means that her brain is telling her body that it can't do the things that it used to do.  She accepted that answer just fine.  Now if she is struggling with something she will say "My brain is telling me I can't do that."  I have mentioned that she probably will never walk the same as she did, but have not told her anything about the continued regression.

Last week we had a meeting with the residential staff.  They told us that one day they went to wake her up from school and became very concerned because they could not wake her up and she was really out of it.  They called the nurse in.  Everything was fine.  I'm not sure what that was all about.  It could be that she isn't sleeping well so she had a hard time waking up.  The other thing that comes to my mind is that she may have had a seizure.  She has never had one but they are part of many of the neurodegenerative diseases so I won't be shocked if they start at some point. 

We also decided that she is definitely coming home at the end of February.  This month we will be increasing the length of her visits with us.  Thursday I am going to get her at noon and I am taking her to to her old school to visit everyone.  Then she will stay with us through dinner before we take her back to the residential center.

Tomorrow Regional and Crider are coming out to talk to us a bit more about preparing for her arrival home.  

Still waiting for news from genetics.  I think we have about 4 more months to wait.  The wait is killing me.  I just want to know what we are dealing with so we can face it and move forward.