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Tuesday, April 17, 2012

Sad

The plan was to get Girlie's follow up EEG in June (1 year after her seizure).  Hopefully it would be normal, she'd go off her meds, and we'd all live a happily, seizure free ever after.

Instead, in February, Girlie wet the bed.  Twice.  Very strange, indeed, and alarming, as we'd been told that that was one thing to watch for as evidence of night time seizures.  But, if they were seizures, they were completely unlike her other ones.  It was approximately 1.5 hours from the time I checked on her before I went to sleep to the time that she woke me up, fully coherent, to tell me.  None of this post-ictal-hours-before-she-gains-consciousness business. 

Her neurologist said there was no way to know if it was seizure related or not, but suggested bumping up her EEG to now instead of June.  So that's what we did yesterday.

So he called and left a message this morning that we would still need to keep her on medication, there was 'irritability' (meaning, she'd be at risk for more seizures if we stopped her meds, and also ironic, since she is the least irritable person I've ever met), and we'd reset the clock for another year.  Heavy sigh.  I hung up the phone and bawled.

We didn't have...expectations of this EEG, but there certainly was hope.  Hope that all would be well and my sweet little girl could put this all behind her.  And any time you tell a parent there's something wrong with your child, there's a heavy, grippy feeling around your heart because all you ever wanted was for your child to have a wonderful, medical-drama-free life.

On the other hand, J pointed out, at least we know.  Better to know there's something wrong and be able to treat it than thinking everything is okay and then having another terrible incident.  As for Girlie, it will be business as usual.  We won't tell her, and she'll just keep on keeping on.  Still, it makes me sad.  And sooner rather than later, it will seem all fine and normal again.  But tonight, I'm sad.

7 love notes:

Kate Nelson said...

I am sad for you, too. Are heartbreaks like muscles and when they get torn down, they just become stronger? Thanks for sharing your heart.

Melynie said...

Thanks, Kate. I appreciate your kind words. My hope is that while this is very painful for us, that it will be only a forgettable blip for her and someday she won't even remember. I'll let you know if hearts get stronger. :)

Happy Mom said...

Parenting is sooo hard! (and beautiful and the best and exhausting). Our hearts are so wrapped up in our kiddles. The news you received may be best in God's eternal plan, but today it just stinks.

Your family is in my thoughts and prayers.

Aubrey said...

I'm so sorry, it is so hard. It's hard to spend every day worried that something drastic will happen, that you'll be running to the E.R.. We just want our children to be healthy and "normal". To not have to do extra medicine and procedures. But you do get stronger, abnormal things get more normal and you just keep hoping. And if you find that things may never be "normal" in this life (which I don't think will be the case with Girlie), you know that when she is resurrected, all will be well. And they grow up with more faith and more understanding of what's really important and that's a great blessing. I'll be praying for you and for Girlie. Love you!

Karen said...

Just wanted to send hugs and love and some prayers for you all. Love you.

Amy said...

So sorry, friend.

Jessica said...

That is sad! And I am not really sure what words of hope or encouragement I could offer that would make it not so sad. So, I'll just say I am here. And I am a good listener. And I can cry with the best of 'em. And it's almost apricot pie season.