EMU

Since September Alex's neurologist has been saying he's going to get Alex into the Epilepsy Monitoring Unit at MCV to see what's actually going on with the episodes that she's been having.  I honestly believe she has some kind of apnea because the seizures only happen when she's falling asleep or lately when she's in a deep sleep. Without going into too much detail, we FINALLY were scheduled and we got here yesterday morning. 

She was checking out the view from her room...top floor of the hospital so I keep teasing her about her penthouse suite:

Hooking her up to everything has GOT to be the worst part.  She has to stay very still with her head in the direction they're working on AND you have to keep her hands held down so she doesn't start pulling all of the leads off - it is not an easy task.  My back was not happy after an hour and a half of this position:

She was not a fan of it either, but all things considering she was so good.

I think she forgave me once she was done and her head was wrapped up.

Clearly she was much happier to be with Tabitha.

Zach and Aaron came for dinner and Alex was so happy to see them - and Zach wanted to be in bed with her (the night before we came in he insisted on sleeping with her).

 He's always very loving to her, but he's been even more so the last couple of days.  His kiss goodnight...

We barely got any sleep - one of the top 5 things I hate most about hospitals.  At one point we both fell asleep and I woke up to her making a bunch of noises.  It was dark in the room but when I got out of my bed I couldn't see her...then I saw why...despite lots of padding on the bed, she managed to squeeze herself out of the bed in between the two bed rails.  The only part of her that was still on the bed was her head.  I had to buzz for the nurse because she was so wedged I couldn't release the bed rail or lift her back on the bed.  The room is equipped with two huge cameras that follow your every move.  The nurses station is supposed to be manned at all times but they clearly didn't see her so I have no clue how long she had been like that.  There went any sleep I might have thought about getting!  I'm just very thankful she didn't completely fall out onto the floor. 

Of course, she didn't have any episodes last night.  Today they are going to stop her seizure medicines to see what her scans look like without the medicine and to see if they can catch one of her episodes.  The bad part about that is that they have to hook her up to an IV in case she needs emergency meds.  She is NOT a good stick and she often pulls her IV's out so I am really not looking forward to that.