Thursday, December 17, 2009

Home sweet home

Hey guys, we are home..yay!! I will do a super brief review of what we know, and then I am off to take a nap, as long as Kylie stays asleep. Right now she is making noises and kicking, so maybe a nap will come later. K, this morning we saw what looked like a pretty good replica of the odd head movement that we have been seeing...there is a possibility that it was because I had just turned a big light on in the room, and Kylie likes to look back and all around to find the source of light when she notices that one has come on. So that is a bit of a worry for me, that we didn't get a true account of what she has been doing.

Okay, so then we saw the doctor like 2 hrs after that, and he said that everything was normal and he didn't think a movement like that would be seizures. I am just praying with all my heart that the couple possible movements we saw over the course of the 24hr hookup were indeed what we have been seeing, and that we have the right info in hand right now. We both so much want this to be the end of EEGs and all that....without wondering if something was missed or if it is lingering out there in her future. I feel that there is still a hole there...there still needs to be some sort of explanation for what I see her doing. I know her better than anyone and I want to know what this is, and why it happens so my heart will continue beating normally and not shudder when I see these things.

I know some people will tell me to let it go, but to that I say no...she is my baby and I will never let anything go because I love her too much and want her safe and well and to have everything we always dreamed of for her...nothing less, because she deserves so much more, especially for all that she has been through and how strong she has been throughout.

So yeah, that paragraph above is a super nice precursor to anyone that wants to say anything to me about letting things go. So please don't... these are my feelings, and she is my beautiful, amazing little girl and I have a right to those feelings and to be protective...I'm her mom. (maybe this little note isn't necessary to some, but to me it is because people can say things that can easily upset me, especially since I am super sensitive).

K, umm...the doctor did say that since he did not think it is seizures at all...not from the video or EEG, that we would get Kylie disconnected and go home and that it could be one of many things as to why she does the head thing. He did mention that it could be some sort of tic that most kids grow out of. He didn't mention too much other than that. I will try and get a clearer picture on things when Matt gets home (he headed back to work), and will update further. Right now I need to rest and regroup a bit.

Thank so much for the prayers and following along. Love and blessings to you all!

1 comment:

JSmith5780 said...

As a parent of a child with Epilepsy, you never stop watching and waiting. It's the sad reality of our lives. Even when Austin makes it to a year SF (he's about to again), I am still watching and waiting. But you will learn to relax a little over time. And to give them more space to explore and learn.

HUGS to you. I wish you and your family a very Happy Holiday season!


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