Wednesday, September 26, 2007

The research program at NIH

Last night the research assistant from NIH called me back. She said they are inviting us to bring Acadia to Bethesda, MD for a one-day evaluation, after which they will decide whether to invite her to participate in the research study. If they do, then we would need to make the final decision to go for it, and stay for four more days to finish the initial evaluations. They provide airfare and lodging for us at their Children's Inn.

So we discussed all this last night. We agreed that the first evaluation we can definitely do; even if they decide Cadi's not right for the study, she and I wouldn't mind taking the trip and doing the evaluation, we're pretty used to those. As for the rest of the study, that's the difficult part, because Acadia would need to be admitted and stay down there. What they do is taper her off all her current medications, do testing, brain imaging, and evaluations on her un-medicated brain, and then stabilize her on medication again, either the same or new medications depending on what she needs. This whole process takes between 2-3 months. She would be able to leave the hospital if she was stable and safe enough on nights or weekends, but would have to be there the rest of the time participating in the day program. There are no more than 3 kids doing this program at a time, and they provide a very structured program for them with tutoring, various recreational therapies (pet, music, art, etc.), daily meetings with the psychiatrist, a personal nurse, a point system for behavior, and plenty to keep them busy. Airfare is provided for parents to visit every two weeks, but we figure we can work with that a little bit.

Actually are a lot of logistics to work out, but if we do this, we are going to figure out a way to make sure that no one in our family is completely abandoned. We all need each other, and we are going to have to sacrifice our family life to do this, but no one is going to be left for 3 months. God can bring us through this without it being a destructive thing for our family. This is our greatest concern about the whole thing. We have no guarantees that this will be the answer for Acadia, or that everyone will do just fine with the separation. All we have is the promise that God, our Creator, and the Lover of our souls, will be with us, working all things for the ultimate good, will be close to the brokenhearted, will meet the deep needs of our souls for family, will keep working in each of us to make us more like Jesus, and will do all things for His glory.

5 comments:

D and S said...

Thanks for sharing the details. I will be in prayer for your family to know what is best and how to respond to everyone involved in this study!

Heather said...

Oh Kathryn - What difficult and big decisions to take. The research at NIH sounds wonderful in the sense of helping Cadi and learning more about what she needs. Plus, it is the top center for research around. However the idea of so much separation is scary.

I love you and your family, and of course all of this is in our prayers (Gary and I). If you need a friend to travel to Maryland with you and Cadi I am more than happy to pay my own way. I need to discuss such an option with Gary, but we would love to provide some tangible assistance. Plus, if you need a place for your fam to crash to be closer to Portland (for the airport in particular, or whatever) we are happy to be that as well. Love and HUGS! Heath

UNCLE DONALD said...

DEB

I WILL SUPPORT YOU FINANCIALY

AND

PRAYERFULLY

UNCLE DONALD

Faith said...

Kathryn and Dan,

I hate being so far away...I trust that you will with God's leading make the right decision. You have family reaching out to help in many ways..and that is so wonderful.

It sounds like a great opportunity to help Cadi...

You are in my thoughts and prayers.

Love and hugs,

Faith

Faith said...

Kathryn and Dan,

Prayers and blessings as you travel and get Acadia settled in.

Keep us posted on your blog...

Hugs,

Faith