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one of each

The Happy Vid...

I have NO clue what he was singing...but it sure was cute! Music is Trevy's passion!




The Sad Vid...

We wanted to capture at least one cluster to show the white coats next week. We meet with Dr. Neuro...and Dr. Neuro Boston. This cluster was actually on the milder side. We've been seeing much more violent spasms involving both arms raising over his cute little curly top. Lots of lip smacking too. Which vanished for awhile...but with the Zonisamide wean we're seeing it again? Lots to talk about next week...


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Mrs. M said…
Ah, that's heartwrenching to see Trevy's soulfull eyes during the seizures. I just wanted to pick him up and take him in my arms. I can only imagine how you feel over and over again throughout the day, and how they make Trevor feel. It must be so scary for these little guys. My heart is with you guys. Good luck with the Neuro teams.
And the first video CRACKED ME UP! I love his passionate singing away, clapping his hands and them hey! what's outside, better get closer to the window for a better view! He's adorable, Danielle! Love him up!
January 25, 2009 at 8:21 AM
Mama Skates said…
omg - the girls & i were awwww'ing like crazy, watching trevy sing his song - LOVE that! good luck next week!
January 25, 2009 at 8:33 AM
Sophie's Story by Elaine said…
Oh Danielle...he was absolutely adorable singing and clapping!!! What a cutie!!!

On the other hand, I just wanted to scoop him up and hold him during his seizures. It's hard to videotape, isn't it?!?! I hate watching. I'd just rather hold her and feel them and not see them. But that videotape is going to be so useful for the docs. His seizures seem so onesided.

Good luck with the neuro appts.
January 25, 2009 at 10:54 AM
Danielle said…
His singing kills me! Every time! And lately he'll wake up (at 4am!) and just sit up in bed singing! SO cute!

On the other hand...the seizures tear my heart out. It's really been affecting me lately. My heart just aches for him. He'll run around with Toby & Bri for five minutes...and that'll trigger a cluster which wipes him out for an hour.

Elaine...I'm SO glad you noticed too! How his right side is VERY affected. His last EEG was generalized...but the clinical presentation makes it look like it's really focused in his left hemi. I'll definately be bringing this up when we chat next week.

Anyway...thanks girls! Your moral support is sweet today. I'm feeling very blue...and reclusive...and achey like I might be getting sick?

...danielle
January 25, 2009 at 11:04 AM
KC's Warrior Mama said…
Ok, so I swear he sings "window" while he is looking at it right after you ask him what he is singing about. 24 seconds into the video. LOL check it out if you didn't already. Maybe Trevy's Ode to the Window?? lol
On a more somber note, my heart breaks for you and him watching the second video. He is so amazing...he just deals. I feel sick just thinking about what you are going through. I know your heart breaks with each and every spasm....that's a hell of a lot for one heart to take. Praying for you as always, and sending lots of love.

Karen

P.S. I have found someone who is donating backpacks which are perfect for EEG's. Would Trevy like a cute little backpack? We have Elmo, Bob the Builder, Superman, and some others. If you are interested then email me and I will send one to him.
January 25, 2009 at 6:25 PM
Adesta said…
Oh Danielle....I loved the first video. Trevy sure does have a way of stealing everyone's hearts. :)

That second video very nearly did me in though. I am in awe that you see these multiple times a day and yet you keep on going for the little guy. He's so lucky to have a mom and dad like you and J. I wish you well with your doctor appointments this week. Hopefully you get more answers than questions when all is said and done. {hugs}
January 26, 2009 at 5:58 AM
Anonymous said…
I think we have a star in the making!! That song was way too cute.

Grams
January 26, 2009 at 6:22 AM
JSmith5780 said…
Can't see you tibe at work. I will have to try and view them this evening. Can't wait for trevy's star singing debut! The seizure video... I can definitely wait for that.
January 26, 2009 at 7:20 AM
Shanna Grimes said…
Did my last comment go through? Didn't get that msg "wait for approval msg".

He sounded like he was singing a church song to me!! So cute!!
January 26, 2009 at 11:32 AM
JSmith5780 said…
Not sure my comment went through.

He definitely says window twice. At the very beginning and then again at about the 30 sec mark!

His right side is way more affected!
January 26, 2009 at 7:12 PM
Mrs. M said…
I agree about the right side affect. Much more obvious. His arm goes higher, etc. Worth checking into...more focal, localized than general? And nothing showed on his MRI?
January 27, 2009 at 6:08 AM
Carolyn said…
The second video... my heart stopped eat time he spasmed. I started crying it brought back such strong memories what happened with my daughter.
January 31, 2009 at 10:06 AM
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