Happy 2 month birthday Evie Jayne!!! I love you beautiful girl.
Well the "signing, sealing, and delivering" of the contract took a little longer than expected, and is setting us back a week. We didn't meet today to do Evie's baseline visit, but are meeting next Tuesday.
The GREAT news is, as of today, everything IS signed. The drug company has signed, the IRB has approved, so we are GO!
I am slightly disappointed that we aren't starting treatment next week, but I am so pleased with the way the doctors have carefully combed through the study protocol to make sure Evie isn't in any danger. It is so much more important to me that we have carefully thought through Evie's treatment before rushing into anything, and she continues to do remarkably well, Praise God for that answered prayer!
I found an article about the study drug Evie will be starting, if you are interested you can check out: http://enobia.com/press_releases-32.html
As I was browsing the website I discovered that the first infant to try the treatment started in October 2008... barely over a year ago. I am just blown away at how blessed we are that this treatment is available for Evie. Totally... blown... away.
Lastly, my Grandma Maurstad passed away one year ago today. Just wanted to say I miss you grandma. I sent you all of my email updates during my pregnancy, I know you were rooting for us (: I love you so much, I'm sure you are playing more beautifully than ever. Wish you were here.
Love you friends (:
Happy 2 months Evie!!! You are such an amazing and strong sweet gift! We are so glad to hear that the plans are in place and everything is a GO! It's truely wonderful that this treatment is available for Evie! I'm sure your grandma is so proud Lindsey! Praying for you all always!
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