Friday, August 15, 2008

he made me laugh

A whole slew of people were waiting to hear from me after the JEC meeting last month. Including a neurologist/activist who has been instrumental in opening up a new option for IS parents here in the States. Synacthen - the synthetic form of ACTH which is used throughout Europe & Canada. There is controversy in that the side affects may be greater...and it may need to be administered in higher doses. But at around $600 per vial...it's much more affordable than it's natural rival Acthar gel...which can cost up to $40,000 per vial.


Anyway he & I've emailed a bit...and I knew he'd be among the interested. So I whipped out a short email with a link to the Brass & Ivory post. Which by the way...I was terribly happy she'd blogged...since I, myself, was in an exhausted stupor.



He responded me this...



Fantastic! Hope you gave them hell!




Followed shortly by this...



Now that I read the article, I find out you're in the ministry. Sorry.... should have told you to give them heck.






8 comments:

Andi said...

I love your blog. I have no idea who you are, but I think of you often and hope that Trevor is doing well.

I'm not sure where I fit in in the IS community. Most of the time I don't feel like I fit in at all. But your posts make me smile. Thanks!

baby trevor's mommy said...

Andi...thank you SO much! Your comment made me smile! I know we've never met...and even though our IS lives are not the same...for me it's a connection. Sooooo...you fit right here with me!

(((hugs))))

...danielle

KC's Mama said...

Danielle,

How interesting to read the comment left by Andi, because I logged in to tell you how much I love your blog as well! You know I've been a fan for a while, but I just thought it appropriate to tell you that i think your intro describes it perfectly. When I talk to you...when I read your stories....I feel heart connect. It's such a blessing in this scary world that we live in as IS mommys. Thanks for that.

Love Karen

www.greenthevaccines.blogspot.com

Shanna Grimes said...

Well, you know we love your blog too. Yup, I'm a stalker, big time!

That's too funny. We'll after all god is not with out a sense of humor (nor, are you). He must get a great laugh out of watching me have my daily meltdown ;)

Did you ever reply to that email you forwarded me from our mutual friend in CA? *wink*

baby trevor's mommy said...

Awww...sheesh you guys...you're making me all sappy! I totally agree...we need eachother...and can relate to the frustrations & joys that IS brings! I NEED that connection! ((((hugs))))

Oh...and Shanna...I agree...HE does have a sense of humor! And I love to laugh at stuff like that email!

...danielle

LISA EMRICH said...

I'm so glad that you are able to influence (even if indirectly) more choices for patients and parents. Honestly, I don't know details of the drugs, but I do know that steroids in general really SUCK!!

There are side-effects and it's all very serious stuff. I trust that you guys are doing well and I really did enjoy meeting you briefly that day at the JEC.

Take care,
Lisa

P.S. Now I kinda am curious to read that entire email. The brief clip I saw was funny enough, but....

baby trevor's mommy said...

Lisa...I've already told you but feel inclined to mention again...I stand in awe of your mind! It was a joy to meet you & your mom...who I thought was just adorable there supporting you! I suppose the goal is to just to continue doing what we can to influence change...

...danielle

~Mama Skates~ said...

haha - too funny! (my mom's dad is a retired methodist pastor & my uncle is a southern baptist preacher)