Maddie and Ben

Last night we received a visit from our firecracker Maddie. Anyone who knows Maddie, knows she is not short on energy.  She came with some dear friends that Dustin and I describe as the grown up versions of Maddie.  You felt the energy in the room rise about 100 levels:)  Dustin and I were able to take Maddie out to dinner and Bailey spent some time with my friends watching them entertain her.  When we got back they had decorated the room with pictures of Justin Bieber, stickers and had written a new version of Beyonce's, "All the Single Ladies" in which they changed the lyrics to, "All the single doctors." Bailey also talked them through a new dance called "the Wobble."  Now you understand why we call them the grown up versions of Maddie.  It was a good break for Bailey but she was ready for some quiet time when they left:)  Dustin and Maddie stopped by the chapel in the hospital and later she took me down there to show me what she wrote on a card and attached to the prayer tree. 

It says:  Dear God, Please put you power on Bailey as she's struggling with her health right  now.  I am praying for her all the time.  So please heal her fast and soon.  The Gists

This morning we had a visit from a new friend from Grace Crossing.  Ben called us the other day and said that he really wanted to encourage us some way and he would really like to come down and sing some worship songs for us.  Bailey loves to sing and I have attached a short video of the song she requested Ben to sing. If you listen closely you can hear her sweet voice singing along.   It was a complete blessing not just for Bailey but for all of us:)

So I am having trouble loading the video here but I will work on it later:)

Okay.  Here is the medical update.  Bailey spoke to the Psychiatry team today.  It was really great to get some answers from them.  Their take on what she has been experiencing here is that Bailey has suppressed her fears for so long that her body is making her have a physical reaction to how scared she is.  They gave us some great advice on spending more time treating Bailey more like a part of the decision process and just educating her on her illness.  She has heard a lot of scary stories such as the recent teen phenomenon Ben Breedlove who died one week after posting a video to you tube about his battle with congenital heart disease.  They also talked about Bailey's feelings of being completely alone in her illness in that she doesn't know anyone else like her.  We are going to look for a support group for her to help her feel like she is not alone. 
Cardiac news is that everyone is on board for the cath and it looks like it will be Friday or early next week.  Please continue your prayers for Bailey and especially for her peace of mind during this deeply scary time. 
Love to you all,
Jackie:)