Okay, well tomorrow morning (7:30am) Kylie has another EEG to start off her day...and ours. Sad thing is that it doesn't start tomorrow, it starts tonight....you know, the whole sleep deprivation deal where we have to keep her up an extra two hours and get her up 2 hours early and keep her up until the test starts. Goodness, we still have another hour plus to go, and I am already tired.
I'm not sure why, but Matt and I are kinda not wanting to have this one done. Not that we really look forward to any of them, but this one is not something we are excited about. I guess it's because things have been so great, and this is just a reminder of where we started, and many other thoughts that I don't want to say out loud. Just don't want the good things to stop.
Friday (9:45am) we meet with Dr. LePichon, Kylie's neuro, and he will go over everything with us. We are looking forward to meeting with him, since we have not seen him since sometime in May. I'm not sure what questions we have for him, but I'm sure we will think of some before then...we always do :)
So if you all have a moment or two, think of us while you sleep because we will be pooped trying to keep a tired baby awake. If it's not too much trouble, some prayers would be good too :)
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7 comments:
I never got the whole sleep deprivation thing. At least for Sophie. She cries so hard when they put the leads on that it knocks her out. So I never did much depriving...just made sure she didn't sleep more than normal. Though I think things would be different now...she has SO MUCH more energy now that she is seizure free. Luckily, she is now due for another EEG until 2 years after seizure.
Good luck tomorrow...I will be thinking of you all.
I never deprived Trevy either. Sleep comes natural to him too. Although maybe we'll finally outgrow these two naps a day if he has surgery! ;)
In the meantime...thinkin' of you sweets. It's a tough one...
But hoping the news is FAB!
...danielle
ps. I added your blog to mine today. Somehow I thought I'd already added it? I'm hoping it's okay by you???
We've all been thinking about you here. Hope you are surviving the sleeplessness coupled with the stress of everything.
Bobbie
Elaine and Danielle,
Thanks for thinking of us today! I don't think we can ever get used to seeing Kylie getting hooked up for an EEG. She just gets so worked up and it just breaks our heart.
So that makes me think that we may rethink some of the sleep depriving if we have to do this again....makes sense since it wears her out and gets her so worked up.
--Danielle, so glad Kylie made it on Trevy's blog :) No worries, just smiles.
Bobbie and the gang at AB,
Thanks for thinking of us today! Kylie was pretty hyper and feisty this morning, but once things got under way she did what we needed her to do...sleep :) Such a tough little cookie!
My exhaustion is showing through...I meant to say "she is not due for another EEG until 2 years after surgery". Though, hopefully, it is also 2 years after her last seizure.
Elaine,
I was kind of thinking that is what you meant. That is awesome!! No EEG for 2 more years...that is one more thing to celebrate :)
I was kinda thinkin' that...buuuut...you just never know! So I always ask first...
And Elaine...you're cute when you're groggy! xoxo
...danielle
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