I got word today that we have "conditional approval" from the IRB. That is a good thing! It means some things need to be changed, hopefully just minor wording changes, and we will be good to go. A representative from the drug company is coming next Wednesday, to hopefully get everything hammered out and finalized so we can get started.
They are still looking at the week of Nov 16th, and if Evie does well and tolerates her first IV dose we may not have to stay in the hospital the whole 2 weeks of beginning treatment. That would be wonderful.
If this medicine does what it should do it should be fantastic. The first few patients have had amazing results and that is what we are going to continue to pray for. I so badly want her to be able to do the things a "normal" kid and adult gets to do, so we are starting at square 1, and this treatment seems to be where we need to begin. I feel so blessed that there is a treatment for Evie's condition, and God has paved the way for us this far.
Thanks again for prayers, I am continually amazed at how clearly and wonderfully they have been answered. Thank you Lord!
Hopefully I'll be back soon with more good news (: Love you!