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it begins...

Shortly after 11 am yesterday I signed the electronic notebook for the first installment of Trevor's ACTH. I hate when they won't ship the whole course together. I thought our insurance company was just stingy last time. Evidently Medicaid isn't willing to ship $150,000 all at once either. But I'm sure it really has nothing to do with the price tag...


And I suppose I should be thankful that the delay was only four days from submission of need...to standing over our baby with a gleaming syringe. But somehow it has felt longer than last time. Just as stressful. Just as scarey. Just as sad. And I still hate having to live today. But I hate his spasms more. And so J & I will take a deep breath...and inject our son with a cocktail of Hope & Nasty.

Again.
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Comments

Monica~ James~ Connor said…
Good Luck. Trevy you can do it!!!! hang in there Mom & Dad...you can do it too!!! We're all here for you. =)
September 11, 2008 at 4:30 AM
Mama Skates said…
good luck girl!
xoxox,
sharon
September 11, 2008 at 6:12 AM
Anonymous said…
I hate to think how much longer you may have waited if you weren't on Questcor's radar! I'm glad you have renewed hope at the end of that syringe:-0 Hopefully this will do the trick and Trevor can continue to develop without missing a beat. I'll keep you in my prayers.

Erin
September 11, 2008 at 11:47 AM
Danielle said…
Well...I'm proud to say...we made it. Of course I bawled my bloody eyes out. Trevy was just darn tootin' mad! He got over it WAY before me. And the rest of the day has been...okay. He's a bit clingy. He's already eating better...thank you ACTH...my poor little guy hasn't been eating good in weeks! He had a cluster of 7 this morning pre-injection. They were mild...but there...and my heart needed that to cement this was right. He had a cluster of 10 after his morning nap...more intense. Both arms lifted. Which is sad for me...somehow I feel safer with only his head & eyes moving? *sigh*

Anyway...this is turning into a post...maybe I'll tranfer it there?

Thanks girls! xoxoxo...danielle
September 11, 2008 at 12:19 PM
Sophie's Story by Elaine said…
I have been thinking about you and Trevy all day.

(((((hugs)))))
September 11, 2008 at 9:44 PM
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