Friday, April 17, 2009


(This is Matt) We were admitted to Children's Mercy earlier this afternoon.

We busted tail down to neurology and got an EEG done. The doc came in and pretty much immediately knew - or at least I could tell he did. The nurse gave me some hints and my heart immediately dropped completely out of my chest.

We went back up to the room and that same doc came in and punched us both in the gut, figuratively, of course.

Infantile Spasms. Sounds pretty benign, right? Not so much...

Today has definitely been life changing and makes us appreciate every moment even more than the last.

The bright side: 6 weeks of ACTH, a relatively dangerous drug that has show some proficiency at fighting this. Also, a three-week supply of ACTH is about $22,000.

Yeah, that's what I said. No misplaced decimals there.

Luckily there was a "financial aid" person in the neurology department. It is her job to procure this drug at a reasonable cost. Sounds kind of like a "don't ask, don't tell" policy".

We should know within a couple weeks if the drug is working. They were all shocked at how quickly the pieces fell into place for us to get in here. Her first bout of this stuff was on Tuesday. Here it is just four days later and we've got our diagnosis (although it isn't pretty). Also, the hospital just happened to have one "vial" of this drug floating around. One vial is roughly enough for a five-month old for a couple of days (over a weekend).

Thank GOD for that stuff. Thank Him and only Him (well, the docs might deserve a bit of cred, but we all know where it came from). I don't really understand any of this, but I know He does. I know that we're in good hands.

Now, for the downside...we'll just have to hope that He doesn't have it in the plans for there to be a downside. A few minutes researching this nasty condition online with break your heart. With that said, there is no downside for now.

Please pray for Kylie...

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