Infantile Spasms Video


~Mama Skates~ said...

wow, what a touching video - my heart goes out to u and all the other parents dealing with infantile spasms! i noticed that trevor's diagnosis date was just last november...this is all still so new to u and yet, u sound so knowledgeable and informed! thx for sharing this info with us!!!

Kelly said...

I was not under the impression that ALL I.S. was the result of Tuberous Sclerosis. Is that the case?

Also, I was pleased to see one of Michaela's doctors on the video and on the TS Alliance board. Very cool.

baby trevor's mommy said...

Sharon... you are TOO right! This is very new for us. Actually, I was literally packing our bags to return to Tanzania,East Africa (once upon a time we were missionaries :o) when Trevor's seizures started. His dx has seriously turned our world upside down. In fact, my hubby just sent our resignation in last week...and is now sending out resumes. It's been a crazy...faith stretching few months.
My dad says I'm an activist...many of my friends would agree. The night that he was dx I started researching...and found there wasn't a lot of info out there on IS...and what was available was just sad. So...I set up this blog. It is to keep friends & family up to date...but it's also to provide information for parents. Especially the ones that are new & scared to death like I was a few months ago. Thanks for noticing...
Hmmmm...a few more words and this will morph from re-comment to post!


baby trevor's mommy said...

Hey Kelly! You're on my *grrrr* list...every time I go to your site I leave feeling guilty! I swear that tracker has eyes...and they're staring right at me! :OP Actually...you have inspired me...and I've attempted to make better food choices recently & have started making exercise a priority again! btw...are you doing WW? Or just on your own?

The under-lying cause of IS varies from child to child. TS is one of the factors...and it just so happens that the TSA (I believe it was spear-headed by their IS Task Force?) put this video together thus the bent. Even tho Trev doesn't have TS (we may never know his underlying cause) I thought this video was AWESOME...especially for friends & family who haven't really been able to wrap their minds around HT's dx.


~Mama Skates~ said...

well major kudos to u for being such an activist for little trevor & an inspiration to lots of other parents dealing with this....i admire u!

on a lighter note, in response to ur comment on my last post...

what can i say? they all just love the camera! well, and i guess maybe i take too many pics, so they just know the deal by now ~lol~

and ur comment about my cakes was too 'sweet' - ok, i'm a dork! ~lol~ i can't wait to get more pics uploaded....i haven't been able to add any new cakes to my site since like christmas....waiting on my developer to upgrade the site - u know how IT guys r....they take forever! ;0)

labonte4 said...

I was watching this vid. last night and Christian walked by during the part where they say "there is no cure". He screams out "Mom...they don't know what their talking about, they must not know about the shot you give people in thier buts"! (talking about the rectal diazapam..our "rescue" med)

We both cracked up! I'm still laughing this morning. I did later explain that they were talking about not having a seizure in the first place!

I love having kids.