This Crazy Life

I’m still waiting to hear back from Denver.  They did call me and say they had completed the evaluation and they thought she needed the residential level of care.  They then proceeded to tell me all about residential and how it works and if I had any questions.  No, this will be her 4th stay…

So, 9 days after discharge we were back in the hospital.  Again.  Low heart rate, upper 30s while awake.  Orthostatic, heart rate jumped from 38 to 160 upon standing.  Low blood pressure, 61/33, at one point.  But other than that, she’s perfectly fine.  Except she’s not and her body is just so tired.  We obviously…

The oil is back.  And it’s everywhere.  She knows she’s gaining weight.  She knows she’s eating more than she’s supposed to.  She knows we’re putting oil on her in her sleep.  She can’t sleep because she doesn’t have enough ways to protect herself from the oil.  It’s like I’m stuck in this world of make…

Hospital stay #13 just happened.  It was a snowball of restriction I couldn’t stop.  I knew it was coming.  I knew the ED thoughts were taking over.  I didn’t realize how much she was restricting.  And then it all stopped and she couldn’t eat or drink anymore.  She had to lose weight.  She had to…

I feel like we are on a roller coaster and I need to get off.  I’m working really hard to stay grounded and not ride the ride with her, but damn is it hard.  Monday we had an ok day at the doctor.  She ate.  Not enough, but she ate.  She maintained her weight.  We’re…

I always said that once she wanted to recover it was still going to be a struggle.  I know this.  I’ve always known this.  But knowing it and living through it are 2 different things.  She’s really struggling.  I’m really struggling.  I don’t know how to help.  She’s convinced we are messing with her food…

She’s been in school for 2 weeks.  2 entire weeks.  Somedays have been better than others.  In fact one day was pretty downright ugly.  But we’re making it.  We fried some fish for dinner one night this week.  She of course didn’t eat it, but then that stopped her ability to walk into the kitchen. …

We discharged from Clementine on 8/18.  It’s been one month.  She’s within 2.5 pounds of her discharge weight.  Including the week + that she was at PHP and not eating at all.  She’s still eating.  She’s in school.  She’s communicating with people.  I am still very cautiously optimistic and I refuse to celebrate too much. …

I dropped her off at school today.  A new school.  Starting 8th grade.   I’m so nervous.  But so excited at the same time.  This is a big step.  A step in hopefully the right direction.  We went to the doctor yesterday and she was so positive.  She could see such a big change in her…

She’s been home for just over a week.  She’s been eating.  Not enough in my opinion, but she’s eating.  And she’s doing life.  And she’s trying to be a person.  Which is huge in my opinion.  But I was really afraid weight would be down today.  I just knew it would be actually.  And that…