Well currently I am sitting across from Daniel who is laying in the hospital bed getting his VMR. (24hr. Video EEG). NOT FUN.
If you want a good laugh (to a not funny situation) find our other posts of our experiences with EEG's. Its a good chuckle to see if Lonnie, or if I will survive without killing each other. See adults can't sleep during this time. One of us has to stay awake to make sure if Daniel makes any weird movements that we hit the button to mark the video recording.
We're not sure if Daniel is having seizures or not, but this is the time that I am going to mash that button at any strange thing that I've seen him do. Anything that might even be questionable. This way I will know for sure in the end.
He is happy now as it lays in the bed with his orange pillow, his sock monkey pj's and his Elmo blanket watching Go Diego Go. This was NOT the case when we got hooked up to all the wires today. The whole time he was getting hooked up (which took FOREVER!) Lonnie kept mouthing to me as I was holding Daniel on my lap, "WE ARE NEVER DOING THIS AGAIN!"
It is traumatic for Daniel (and us). It sucks to see him scared and screaming, with tears running down his cheeks cause he is not understanding why this person is doing this to him.
I think unless Daniel actually has a big seizure, or a notable one at least that this will be the last EEG we get for a LONG time.
9 comments:
We are headed for that road again, but since it is not a video EEG we get to do it as an outpatient basis. The last time it went pretty well.
Will be thinking of you guys tonight. Hope all goes well!!
Best of luck. Luckily this too shall pass and life will go on it's merry own way . . .
we LOATHE EEGs 'round here. Although the information gained does have a way of easing the worries...for a while at least. *smile*
Hope you guys survive...
...and that the cafe serves wine! *wink*
I hope you get some good news! we'll be praying for Daniel, and you & Lonnie too.
How old was Daniel when you did the first 24 hour EEG? Just curious if thats in our future too?
Ugh, my heart goes out to you and your family. Especially your little man, Daniel. I know from experience how traumatic this is on both the parent and child. My son is 3.5 years old and has spastic quad CP. We dread EEG's. Sending you some prayers...
I also hope Daniel won't need another EEG for a long time, and that the report is clean.
Max is on Trileptal to prevent seizures, though as you know I sometimes freak and think he might be having seizure activity.
That sounds so sucky!!!! I hate hospital time and I imagine it's a lot worse when
You know, I think we stress WAY too much over our kids and seizures. The other day Charlie made a "weird" movement and I thought he was having a seizure--yeah, we was clapping. I stress too much sometimes.
I may be going away for a few days without Internet connection, was hoping to hear about results of EEG. So if I don't check in, I will as soon as I am back.
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