12/13/2007
Your 2nd EEG - I wasn't looking forward to it. And yet I was. I wanted - needed - to know if you are still having electric charges surging in your little brain. Every little grimace you make. Every little movement. Every little sleep interruption. Every little bit of crankiness. Every little anything - makes our hearts drop. That's the thing about babies - you can't tell us if somethings wrong. Ugh!
The snow started before we even made it to the hospital. It wasn't supposed to come til' later.
We checked in & headed upstairs to the "mental development" ward. I wish to God that we didn't know the way. But it was all too familiar. And then the nurse came in the room. The same nurse who told me everything was going to be okay! I wanted to scream at her that everything IS NOT okay - but I choked the words back.
You hate - with a passion - being all connected to those electrode thingies. And I don't blame you! It's scary even for me - even daddy. And at the end of the day it was moot because you wouldn't go to sleep!
Your doctor said we need to get a more in depth video EEG anyway - that'll be in the middle of January. After the holidays. Which she said we should try to enjoy!
So that means more waiting. More not knowing. More praying. More crying. More snuggling. And definitely more Christmas presents - just ask Grams!
oh and btw - what should have been a 45 min drive home became a 5 hour bumper to bumper experience! Daddy says it reminded him of driving in Dar - but for the snow!
4 comments:
HOpe the result was OK. Sometimes the EEG can be reassuring. We learnt that some of Sheena's behaviours (like lip smacking and grimacing), were not seizures, they were just her smacking her lips and grimacing. Pred/ACTH can make babies really sick. I think I underestimated how sick Sheena was while getting treated. I'd have been more tender with her/more protective, and not have stubbornly taken her out and about with me all the time just because I wanted her to be normal.
Fortunatly Trev hasn't had many of the awful side effects - other than high BP.
The EEG report wasn't really good -but wasn't really bad either. Our neuro said it wasn't readable because he was awake & she needs sleep patts. Altho when she compared his previous awake w/this one she said it showed improvment.
Anyway...so goes life with IS babies right?! No real answers! :O)
Happy holidays...Sheena is so sweet!
...danielle
I have SO MANY sad pictures like that. It gets better, for you and him. MAybe that's sad in it's own right, that close to four years later I can say it gets easier. He still hates having the electrodes put on, but then he is fine.
Jen
I'm trusting that you're right Jen! I think we've been walking around "numb" for the past few weeks...and then last night it hit me hard. And I just felt like I was gonna drown in sadness. All the sadness of knowing & the sadness of not knowing & the sadness for other mom & dads & babies going through even more! I haven't cried in awhile and it really just snuck up on me - and was very heavy last night.
I totally need a cuppa joe now!
Anyway...in my heart I know you're right that it'll get easier...it just isn't right now.
...danielle
btw...I think Trev makes EEG wear look pretty darn cutsie! Perhaps he should model for the hospital...and that can cover all the medical bills! :oP
Post a Comment