I still haven't heard back from Seattle, but one of the nurses from St. Louis Children's did call me back today. She was very helpful and had lots of good information. She told me of specific stories of kids just like Blair. They do the compression wraps on these types of kids months before surgery! She is going to go over some of Blair's information with the Pediatric Surgeon and she will be calling me back tomorrow. St. Louis is a LOT closer than Seattle for sure. It's about 5-6 hours from here.
Anyway... I will give more updates whenever I get them!
Hugs - Tiffany