More tests...::sigh::

So I had to take Livi for (yet another) EEG this past week....this one was a 24 hour, ambulatory EEG....so basically she had to be 'monitored' for a full continuous 24 hours. Sound like fun? Yeah, not really.

We got to Hamot for our appt at 11:45 and got right in to registration. A shocker, I know. Livi was beyond less then thrilled in being there, and honestly who can blamer her? ...last time we were at Hamot was for her MRI in the not-so-past, past....and IV's from hell. I wouldn't want to be there either poor girl.

Here are the fish....the "entertainment" while we were waiting to be called back. Livi proceeded to 'talk' to them in her best fish voice.....telling them how she used to have fish but they all died. I'm sure the fish were thrilled, lol.

So we get into the room and get 'scolded' by not having Livi wear a button down shirt. Well, ok, maybe it was a little bit of common sense I suppose, but I didn't think about it. Sue me. So she'll have to wear the shirt she had on overnight until the next day. I think she'll survive thank-you-very-much. The nurse/Dr/I-have-no-idea lady informed us of all the things that were going to go on....again, we brought on the common sense. No bathing. Uh, really? She's getting live wires attached to her head. I'm pretty sure I wouldn't think of submerging my child in water. ::eye roll:: Yet the sad thing is, I'm sure there's a reason for saying not to bathe your child while hooked up.......

After marking her head up with a red crayon, she starts attaching the wires. Not too bad, Livi is sitting still, being good....everything is going well. But then the tech lady starts talking about the glue. The wha?? Oh yes, they have to glue each of the wires to her scalp to make sure they stay on overnight. Yippee. And the glue? Well it smells like glue that you build model cars with. Oh yay I say. Let's just skip past the next TWO HOURS and just round it up by saying it didn't go too well. Livi was GREAT, don't get me wrong. She stayed still (we "glued" her back to the chair so she couldn't move, lol. It worked!), listened extremely well, everything. But the glue smell got to her. She was coughing and gagging, and the last half an hour was begging and crying to go home. Nothing breaks your heart more then when your child is sitting there, crying and looking at you to make it better. She begged to not have them do this anymore. And it took everything in me not to take her away from there. :( This is from halfway done.......

When she was finished attaching everything we had to unhook the wires from the one box, and attach them all to another, smaller box, that Livi had to carry around with her. Then we tested it. And tested it again. And once everything was correct, we were free to go. Fast forward to home.....

(The big giant teddy bear that Mike bought her that day!)

First off, that box she had to carry around was pretty heavy. It held the mechanism that attached the wires, and a big battery pack thing. And it was on a shoulder strap that just wouldn't stay up for her. So her night was spent on the couch. Which was easier for us making sure the wires didn't move. And we had to journal everything. Every single thing down to a burp or hiccups we had to write down the precise time and how long each thing lasted. That way they could compare it to her brain activities at that time. We had her sleep with us that night, although I use "sleep" extremely loosely. There was no sleeping at the Kraus house that night. Well, except for Violet that is. :) But we made it through, and into the next day. We had to be at the hospital at 2 to have them removed. And OMG the amount of glue that was in her hair was ridiculous! Livi was beyond ecstatic to go and get the wires off and never complained once while they were pulling and tugging on her hair to get the stuff out. I think the girl just wanted it done with, no matter what pain she had to get through to end it. And by the time they took the wires out, boy oh boy was that head of hair a sight to be seen! Unfortunately I never took a picture of immediately after....but trust me....it was bad. Worse then bad. Horribly bad. So we slapped on a black hat, and off we went to try to maneuver it back to normal. Ha! Were we wrong! We spent the next 1.5 hours working on it....and not much progress. Well, I'll take that back. We did manage to get most of the glue out....but here it is 2 days later and there's still glue throughout her hair. It's going to take a good long while before it's all out. We tried everything they said too....acetone, hot oil, conditioner, baby oil, olive oil......nothing. Poor girl looks like she has a skin disorder where her skin is all flaking off.....it looks pretty bad.

So we survived another test....and hopefully this one will tell us something about her seizures. We won't find anything out for about 2 weeks though....and I'm fairly certain all they are going to tell us is that they didn't find anything conclusive to why it's going on, and to start her on medications. And our answer will remain the same....absolutely not. If you can't tell us why this is happening or anything of the nature, then why am I going to medicate her? And I truly in my heart of hearts believe it is over. That she has outgrown them, and it's all in the past. Or so I pray.....