With Flying Colors

That's how my baby came through surgery today! Praise God! This is a picture of her an hour after her surgery, sitting up eating eggs & bacon. She was talking & moving all of her parts. Everything seems completely normal & she is recovering as expected if not better! The doctors & nurses are taking excellent care of her & she is the "Rockstar"  of the ICU :) We  will stay here a few days (3-4) & then go back downstairs to her regular room. Hopefully we will spend the weekend back @ The Children's Inn across the street. I am adding pictures to the family pictures page daily so check there too if you want.

Starting the Next Chapter

It  feels kind of like we are starting the next chapter in our journey. This chapter is full of hope! We made it to Md safely, it was 25 degrees outside when we landed, brrrrrrr. We got checked into our room @ The children's Inn about 8:30 tonight. All is well & we will head up to the hospital tomorrow to start all the consent & admissions paperwork & meet with doctors. It will be a busy but good day. Will check back in when I can.

It's a Go!

So for the past few weeks we have been awaiting the FDA's decision on the clinical trial for cyclodextrin. The wonderful folks @ NIH have been in constant contact with them trying to work out all the details. They were finally given the green light today! The trial has been approved & Julia & I are scheduled to fly up to MD Jan 22nd for a 2 1/2 week stay. Julia will have surgery to install the Ommaya reservoir on the 28th & then receive the first dose of medicine before we return home. We are soooo excited to begin this I can't even begin to describe it. Keep the prayers coming because they have kept us going. That & the knowledge that God didn't bring us to this for nothing, he's been here every step of the way & he's teaching us through it to always rely on him :) Hope everyone has a great weekend!