This Crazy Life

I was sure we’d go back to the hospital on Monday.  Positive.  She’s not eating what we think she needs to eat, but she is eating a bit more than when we went to the hospital.  But we didn’t.  We are home.  For another 2 weeks.  Which is huge to me.  Obviously if things change,…

Even when you know the hospital is coming.  Even when you know it’s going to happen.  I’m not going to lie, it still fucking sucks.  You can never properly prepare to have your kid in the hospital.  Whether it’s the first time or the three thousandth time.  Can you become numb.  Absolutely.  But does it…

What do you do when you’re trying so hard, but it’s just not enough.  We went to the doctor on Monday.  Her weight and vitals are down, but we decided to keep her at home and working on adding some more food.  We then got labs and went home.  Then I got a call from…

And the weight just keeps falling off and the vitals keep dropping.  She did increase 150 calories yesterday.  And is planning on doing that.  But when you’re only eating 1100 calories a day, so now 1250, that’s still not enough.  Especially when you’re dropping 1.5 pounds in 2 days.  But she’s still eating and she’s…

We are on the brink of hospitalization.  Monday she decided in order to have more of a “normal” life she wasn’t going to exercise/move anymore.  Ok, fine.  But in order to people able to do that she’s cutting what she’s eating.  I have not had a chance to calculate it yet, but I will.  I’m…

A day.  For days on end.  That’s how many steps she’s been doing.  How?  When?  Where?  How did I miss this?  She told me she’s been doing this since her old doctor.  So, since February/March.  But she hasn’t.  It’s been since early September.  It was increasing in August but then it spiked just a couple…

Hopes and dreams are a beautiful thing.  Especially when you have a child that hasn’t had any for a really, really long time.  The other day she told me that maybe she could go back to school after Christmas break.  She would have to leave for lunch and eat in the car with me or…

Wash, rinse and repeat.  That is the story of our lives.  I see it as the story for the rest of my life.  And That My Friends is a DEPRESSING FEELING.  But if it’s what we have to do, then I guess it’s what we have to do.  I started back in therapy for me. …

So we’ve been home for just over a month.  She’s been eating about 1900 calories a day consistently.  The exact same foods everyday.  Weighed to the exact same tenth of a gram.  But we’re eating.  And we’re maintaining weight and we’re hanging on the edge of stability.  So she’s been home.  We haven’t pushed the…

School starts next Tuesday.  It seems like this summer was nonexistent.  Looking back, I remember we started our hospital journey before school was even out for the summer.  So I spent a month and a half actually in the hospital.  Let alone the time recovering at home, doctor’s appts, etc, means this summer really was…