Oksana

I'm having myself a little pity party today.  I noticed shortly after Oksana came home from the hospital, that in activities that she had been doing independently for years she suddenly was completely scared that she would fall.  She freezes, starts shaking, and freaks out, yelling "Help me!  I need help!  I'm going to fall!"  90% of the times these are situations where there is no way she will fall.  If she is absolutely confident that the surface she is on is perfectly safe and you don't ask her to make her feet leave the ground at all she is fine.  She walks around the house like nothing is wrong, but then put her in a chair where her feet don't hit the floor and she totally freaks out.  Put her on a sidewalk where she has never been and she freezes with fear.  It's insane!

So I contacted her psychiatrist on Tuesday and she suggested that we reduce the clonidine.  She said she thinks it is making her dizzy and that if it doesn't stop we might have to remove it all together.  We did that and did see some change but not near enough for her to function!  At this point we cancelled her PT because we would accomplish nothing.

Today we went to see the psychiatrist.  I came with a list of behaviors that we have seen since she was discharged.  After reading them she told me we could remove one dose of Clonidine but that if her behaviors came back we had to add it back in.  In the meantime she is checking her lithium levels to see if she can increase it. 

I expressed to her how hard we had worked to get her where she is physically.  She told me to just look at it as a step back and that her therapists are going to need to go back to some more basic skills.  After some discussion I told her that I thought the day would come when we would have to weigh her physical health with her mental health.  We are there and I hate every single thing about it.  Both of her physical therapists have been awesome.  They both agreed that her mental health is the highest priority right now and they will do everything possible to help her on their end.  Now I'm looking at possibly increasing her support again with a second crutch to see if that might help her.  I guess if worse comes to worse we will go back to a walker.  I'm really trying to avoid that.

Other than that things are just up and down right now.  She is still self harming to the point of leaving marks on her body.  She is still aggressive though it is not nearly as often or as intense.  The psychiatrist said she will still have behaviors like this.  The problem comes when she is going at it for hours.  We are in close touch with our Regional Center Caseworker and she is working hard to get us some more services.  Quite frankly, this last month has done us all in.  This is not going to get magically better.  In fact she is about to hit puberty so likely it will be the exact opposite.  We are working hard to get more services in place so that we are ready.  We have 3 other children to care for and we can't live like we have been where 110% of our focus is on Oksana.  We need some more support so that we can take care of the rest of our family. 

This coming week is spring break.  I don't think I need to say any more!  At this point I'm just hoping we all survive!