Tuesday, April 21, 2009

Good Morning To All

So, here we are. Tuesday morning. Our resident was just in a bit ago and indicated there was a pretty good chance for us to go home today. Sounds like it will be sometime this afternoon. We've obviously been expecting this, but now that it's here, we feel a sense of peace. We're just hoping they don't yank that rug out from under us. Wouln't that be mean!

A little more good news from yesterday. Jody gave Kylie her first shot of ACTH Monday, and it went really well. Little Kylie didn't even bat an eye. The nurses that were helping were really impressed with Jody's handi-work.

We also got a few phone calls from various places about the prescription. Apparently our co-pay for a one-month supply of Acthar (ACTH, with an "ar" on the end) will be about $9,500! Fortunately for us, the good folks at NORD (rarediseases.org) specialize in helping regular folks like us out with the money situation. From the sounds of my conversation with Nancy at NORD, they'll be picking up the entire co-pay. Just ouf of curiousity, I asked where that money comes from. Apparently the drug companies make large donations to this place. Think about that for a second. Seem kind of circular? I guess the business of helping people is really a business.

Here's the scoop people (and by people, I mean people that read this, and I have no idea how many that is). We're super excited to be going home, but still super scared. We would love all the company possible.

Just note that since this medication really compromises Kylie's immune system, we can't have anyone over that's been sick or ANY children under 15 years old. Once we know who is in charge of the scheduling that kind of stuff - we've got a decent idea who that will be - we'll post that and we can get everything coordinated. I hope that makes sense.

Big thanks to everyone that has been here for us throughout this interesting journey. Props.

Alright peeps, we'll talk to everyone soon.

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