Safe and Sound in Minneapolis

Hi all. This is Uncle Mack. I just wanted to pass along the news that Sarah, Jimmy, and Gracie are safe and sound in Minneapolis. They arrived on Saturday, and it still feels like winter there. :) They will be staying at the Radisson right by the hospital until a room opens for the in the Ronald McDonald House (RMH). RMH folks said there are a handful of people on the list ahead of them, but that hopefully it will only be a couple of days. A couple of days is no problem, since they were able to get a pretty good rate at the Radisson through hotwire.com. Also, I'll be there on Wed. and they will shack up with me if they still aren't in RMH.

Unfortunately they had to go to the clinic yesterday because Gracie stared fussing with her central line and ripping off her bandage. The docs looked at the area and prescribed some anti-fungal medication, that will hopefully take care of whatever was bothering her.

Today is a big day. Gracie's first day of work-up pre-procedure. Lots of appointments. These are really important exams and consults. They will hopefully a) show impact of the initial ERT treatments on disease progression (or lack thereof - hopefully) since her last visit in Feb; and b) serve as a baseline for measuring Gracie's progress after the cord blood stem cell transplant.

Here is Gracie's itinerary today:

• 9:00 - Review calendar and labs
• 9:30 - Meet with Dr. Orchard - History and Physical Exam (he is the first physician we contacted, and the primary investigator over Gracie's clinical trial)
• 11:00 - Echo - I think this is for an echocardiogram - which is some sort of heart imaging procedure (you may recall, Gracie already had minor valve issues when she had this exam in February)
• 11:30 - Pulmonary Consult
• 1:30 - Cardiology - Dr. Braunlin
• 4:30 - Neurology consult with Dr. Charnas (Another of the key physicians running the clinical trial)

Uncle Mack will be driving from Chicago to Minneapolis on Wednesday to tag along on hospital / doctor visits and offer whatever support possible. I can't wait to see my baby sister. :)