Thank You!

We got some news about our insurance and Cincinnati this week - we'd be out of network there and that could lead to some very LARGE medical bills. So, as of Tuesday morning it was back to the drawing board. Within 36 hours - we had a new plan - Hans will now be seen for an MIBG consultation in Philadelphia next week, and the rest of the plan will follow along pretty much the same as I had described before. Scans will be 10/14 and 10/15! CHOP (Children's Hospital of Philadelphia) is really top-notch - Dr. Maris, the Doc we'll be seeing up there is world class. He is the one who discovered the genetic component to NB a couple of months ago.

The only new exception is that Kev has to have surgery next week - so he'll likely stay here with Elle and Hans and I will make the trip to Philly. We think he pulled something while he was getting the tree off the roof! It's a hernia, and he's in quite a bit of pain - poor dude! I'm glad he went right in to get it checked out. His surgery is scheduled for Wednesday - same day as Hans' consultation.

I owe thank yous to:
Ellen Shohet at TCH who has worked really hard coordinating us with three hospitals and never complaining when I change my mind!

Michelle Nolen researched a special program called CAREFORCE through Continental that provides flight assistance to families traveling for medical purposes and she sent out an email to a few of our friends and contacts yesterday - and she was able to able to acquire enough donated miles in one day for Hans and one caregiver to make FOUR or FIVE trips for medical treatment or consultation. (The number of miles charged depends on how booked the flight is.) People donated 266,000 miles yesterday! Pretty amazing! If there are other families out there who could benefit from this program, please email me and I'll give you the contact info.

Thank you to: The Marek Family, The Arnett Family, The Garrett Family, The Watthuber Family, The Diket Family, and The Neveu's for their generous donations of miles. With those donations we will be able to travel to Philly for consultation, and treatment. I was beginning to panic about buying tickets on such short notice. The last time I looked, it was going to cost us $1198 per ticket to get to Cincinnati on a week's notice. What a really incredible donation that has helped us out tremendously. Careforce also has a program where they will simply buy you a ticket to travel for medical treatment every 12 months. They waived the transfer fee to donate these miles.

Darren, Alana, and Dave, thanks for helping Elle and I clean up the yard after the disaster crew came through and picked up the two large piles that once was our tree!
Kev wanted to be out there - but his darn hernia...

lara