This Crazy Life

What do you do when nothing works.  When she’s trying harder than she’s ever tried but it’s just not enough.  When you can’t stay out of the hospital.  When the OCD is so bad.  When you don’t see how a different residential would help as you’ve done it 4 times.  Honestly just keeping her alive is an hourly struggle at this point.  We had a plan at the hospital.  Which I was 100% confident it would not work at home.  But they let us go anyway.  She didn’t eat or drink after discharge, which is not out of the norm.  We went shopping and got everything to start eating today.  The plan was 3 meals of 700 calories each.  Then 4 bottles of ensure, either drank or through the tube.  So far today we’ve gotten in one meal, which took almost 2 hours, the eating wasn’t long, but the cleaning and the prepping and the measuring.  And it was 659 calories.  Close to 700, but I can promise you, she would not go over by 5 calories, but 41 calories under is perfectly fine.  Just ask her!  So, she’s eating.  And I know it’s a lot.  But her body needs more than 2000 calories.  Her body is starved for nutrition.  She’s on her feet too much (w/ ankle weights on) and moving too much that 2000 calories is not enough.  So, then I think of residential.  I think even if it’s residential just for OCD?  As long as they can maybe feed her too?  I’m going to talk to her team on Monday or maybe if there is a PHP for OCD?  But I feel like it needs to be w/in driving distance to home because we need to work on exposures at home.  Removing her from the home exposures makes everything that much worse when we get home.  I actually think we are worse every time we get home from residential.  Last year, this time of year, when she came home from Clementine she went to an amusement park.  And rode rides and had a good time.  Last week she went to the movie with a sheet and a towel and a plug for her nose so she couldn’t smell the food.  Now granted, she made it through the entire movie which I was very proud of (Inside Out 2)!!  But that’s a huge difference, a downhill difference, from where we were a year ago.  At this point I would be happy just getting back there.  At this point I would be happy just staying out of the hospital, even if it’s barely.  At this point I’m not even wishing for a normal life.  My expectations and hopes are lowered so much lower than what I have for any of my other girls.  I just need her to stay alive.  For another day, another month, another year.  I need her to fight.  And I need her to open up to trying some other things on top of eating and therapy.