Skip to main content

the way we stress

I'm cranky when I'm stressed.  


Which is why it's weird.  I haven't really felt cranky lately.  


I also break out when I'm stressed.  


Since I woke to find two mondo zits (or poppers as we like to say 'round here) gracing either side of my face.  I'm assuming the upcoming overnighter EEG is to blame.


Have I ever mentioned how much I loathe overnight EEGs?  Cause I do.  From the bottom of my very stressed out heart.  Bleh.

The only silver lining is how adorably he wears them...



taken during our surgical evaluation at Detroit Medical Center, Summer 09

November 09 a month post hemispherectomy

March 09 half a year before surgery
Shortly post 1st round of ACTH - Trevy was 8-9ish months

Labels:

Comments

Holli said…
I loathe them too. Especially when they run over 24 hrs. We got so lucky when our 72 hr EEG turned into a 40 hr one. Also thankful to learn that our local hospital told us to sleep at night!!! AAHH, I couldn't tell you how grateful I was for that one. They told us in Detroit one of us had to be awake the ENTIRE time -even while he was sleeping. The tech said that's what they were there for..to watch throughout the night. It's probably the only way I made it 40 hrs without a breakdown. I so hope your hospital does that too..for your sake.

When is Trevy's?

((hugs))

Hoping it goes smoothly for everyone.
January 3, 2011 at 9:50 AM
Debbie said…
Is this just to confirm he is still seizure free????

PLEASE tell me you are not suspecting seizure activity!?!?!?!
January 3, 2011 at 4:06 PM
Danielle said…
Holli...We were there first thing this morning. I think the nurses in D-town are just slackers! The techs do the overnights for us locally. And I've never heard of anywhere else where they require the parents to stay awake overnight. We lucked out in D too...Trevy had SO many seizures they told us just to go ahead and sleep. They had all the data they needed...

Debbie...a little run of the mill epilepsy care and a little seeing if anything has changed. It's been a year since his last 24 hour EEG...so it was time. But also...we've been seeing seizures. Actually, I haven't openly shared it much...but Trevy has been seizing off and on since shortly after his surgery. I haven't made a big deal of it...because in comparison to what our life was like before surgery...this is cake. Seriously. MUCH easier to deal with than IS. It's still heart wrenching. But seeing him continue to thrive helps take the edge off...

Pictures pending...

...danielle
January 3, 2011 at 4:40 PM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more