In motion

Hey everyone,

Well Kylie has been hooked up for a little over three hours now. We haven't really seen any of her typical movements, but 2 possible movements...you see, it is kinda hard to tell with everything attached to her head and the very little space we have for her to move around. We have the tv on for some background noise and it is up high, so Kylie tilts her head way back to look at it, and it is a bit tricky to know if she is turning her head back to see something she heard on the tv or if she is doing her thing.

Anyway, Kylie did a really good job getting hooked up. There were 2 people for the hookup process, so one was able to hold her still and try and keep her attention while we talked to the neuro. It wasn't our regular neuro, but it was one that we have heard of before. It is so interesting to learn that they can all have varying opinions on the whole IS thing and epilepsy and all that can potentially follow IS. I will try and elaborate more on that when we are back home.

Here are some pics we have taken so far. This is before the hookup. Kylie was looking up at the tv.



Kylie found a new toy in the room....hospital cup. Way more exciting than the big tote bag of toys we brought.

This is when Kylie took a nap. The cords aren't real long, and we don't have a backpack to attach to her...not sure if it is because they don't do that here, or if she is just too small to have one on. So we have a little pack with the cords that we have to carry around as she moves, and we are pretty much confined to either her in the crib (not possible because the cords get tangled and pulled on too much), or in the chair that you see me holding her in as she sleeps, or a mini play area that is blocked off and that is approx 5' x5' (it is kinda triangular shaped).

Close up sleepy shot.

Drinking my water, and chilling with dada.

Dada reading some books to Kylie

Kylie realizing mama is taking pics of her

Kylie talking and making silly faces at mama

Look at that smile! Yes, she has been smiling, and laughing, and being silly. It's like she doesn't really know what is going on...that is good :)

Gotta love that face

So we just had the EEG tech come in and ask if the 2 possible movements were typical to what we see at home, and well kinda, but maybe not. She said the neuro will come back by in a couple hours or so when he is done at the neuro clinic. So we will update later tonight.

Thanks for tuning in and stand by.