To say that we’ve returned back to “normal”, would be inaccurate.  Upon my return, I was hoping for only the jetlag to be an issue.  Emma’s behavior, however, has been the biggest issue this week.  I wasn’t sure if the medication stopped working.  I didn’t know if she was adjusting to me being back home (she has a hard time adjusting to people coming and going, least of all Mom).  I didn’t know if it was thoughts of her upcoming surgery.  Brett and I sat her down one night on the tail end of a huge temper tantrum and the truth came out.  Emma is scared about her surgery and hospital stay.  <heart breaking>  We talked with her and told her it was okay to be afraid, but that mom and dad would be with her the whole time.  She’d get a brand new room in the new tower.  I was able to get online and show her pictures.  And I told her that on Friday when we went down to the hospital for pro-op blood work, that we could go see the new room she’d be in and the playroom.  We knew she’d be on the 8th floor.

Friday came, and I took on the task of bringing her down for the routine blood draw.  She has been getting so good at these that the last few times she hasn’t even cried.  Because this time it was at the hospital, she had the worst tantrum getting it done.  It was reminiscent of the very first time she was in the hospital and she was 2 and scared.  It took 2 nurses to do the draw, a nurse, me, and child life holding her down.  And they had to do it twice because she still moved too much the first time.  The thing is, though, that the minute people leave her alone, she’s fine.  She leaves while waving good bye and saying thank you.  Amanda, from Child Life, walked us up to the 8th floor and we got to see a new room and the playroom that Emma would play in.  Emma was super-excited to see these two new places.  With Emma, it’s all about her knowing what will happen next.  Where she will go.  This is very typical behavior for kids with her condition, as for many other kids, especially ASD.  Now that she knew, we went down to the brand new cafeteria and got ice cream.  The problem was that she actually didn’t want to leave the hospital.  She thought she was going to be staying there.  That’s another issue we deal with…how far in advance do we deliver bad news?  She perseverates.

The rest of the weekend has been a roller coaster of emotions for her.  I’m just taking it with a grain of salt (easier said than done) and giving her lots of hugs and encouragement.  I also was able to print out a picture of the new hospital room.  As I type, she’s in bed taking a snooze with the picture right in front of her.  She’ll probably take that picture with her to the hospital, knowing my girl.  It’s just one way for her to have a sense of control in a situation where she really won’t have much.

To top it off, we finally have Emma’s placement meeting tomorrow afternoon.  Yes, tomorrow afternoon, the day before Emma’s big surgery.  Brett and I would much rather be spending time with the kids instead of having to prove why Emma belongs in a different setting.  And I will say as much.  I’m so frustrated with the whole situation that I have a few key points I will be making tomorrow.  While I’d like to go ape-shit on them, I will retain composure and be very firm in stating our case.  Thank GOD for our advocate, though.

I promise to keep you all posted tomorrow evening after the meeting!  And then I’ll post nightly (and maybe even from the hospital) during Emma’s stay.  We’d love any prayers and positive thoughts sent our way, especially for Emma.

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