Wednesday, December 16, 2009

Still going...barely

Ok, so it is about 7:40pm, and Matt and I are both ready to be done with this. We were told that if she does her thing, they can stop it all and review everything, and then we can go. Problem is, we don't think she has really done it yet. It is sooooo hard to tell with the short leash we have on her, and trying to not get the cords tangled and watching her, and I'm pretty sure we are going to go nuts if we have to be here for a couple days. Oh yeah, that is another thing. Matt was told on the phone yesterday that Kylie will only be hooked up for 24hrs, but the neuro said we could be here as long as this Friday...what?!

I took pics of the little area we have, but aren't in the place to upload them right now. I will try to describe a bit of it. Ok, so Kylie's leash is about 3 ft long, and then it is attached to a bag that we have to hold on to. We need to make sure there is enough slack so that when she moves, it doesn't get tugged or pull....ha, fun trying to keep that up when she is always moving (amazing how much she can move in such a tight space...even more amazing that mom and dad can squeeze into the space with her), and the leash is so short. So needless to say it is difficult to see what she is doing when the set up is not so great, because we are having to focus so much on the stinking cords...ahhh!!

K, a bit of elaboration on the doc stuff. Oh wait, let me tell you what he said when we saw him again this evening. He asked if the two questionable movements we saw were what we are used to seeing...umm, kind of. See we can't be sure that what we saw, or kind of saw was it or not, because of how things are set up (hope you guys can understand how extremely difficult it is to pinpoint this stuff can be subtle to begin with, but more so with things here). He said the 2 events were good, and said we would keep taping and he would talk with us tomorrow. Ugghh!! We asked if we could get a preview, and not have to wait until tomorrow, and he said that his review could change by then with the added footage and EEG stuff. So...we wait and wonder what he meant when he said the deal about those 2 events being good. Good that we think we got the odd stuff on tape and it is normal, or good that what they saw tells them something. I'm and kind of guessing it didn't tell them anything, since we are still taping and not the off chance that he just wants to see more.

So yeah, this sucks. By the way, Kylie is in her crib, so I didn't just abandon Matt and the mess of cords, and precious Kylie. We are praying that she can sleep in the crib. The cords are so short that they won't allow her to move around and flop from one end to the other, so we will see how things go. We have a tv screen in our room, so we can watch her there to make sure she isn't getting caught up in the cords or pulling on them.

K, elaboration on docs and their differing opinions will have to wait, I just don't want to type much more.

This is such a mental drain on us both. Just please pray that we can relax more and get the hang of this super short leash or cords better so we can really see Kylie and what she may or may not be doing, and that she does what we have been seeing over the past month, so they can tell us what it means, and so we can go home and Kylie can be free to run around.

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