First ERT Infusion Going Well

Thanks again for all of the guestbook activities. It's wonderful to know that so many folks are following Gracie's progress and sending us warm thoughts. Our hearts are warm, despite the freezing temperatures.

Gracie is in ERT right now. She's doing great! Daddy's training is really coming in handy, as he understands the lines and ports and dressings, etc. He and the nurse are getting along famously, and he's helping out the nursing staff when they need an extra pair of hands. Gracie is lucky to have him, and his training should make us all ease or worries as they head back to FL tomorrow.

I stepped out for lunch and to post an update or two. She started at 10:00 AM. Like I mentioned before, they start slow; 2 (unknown units, maybe milliliters?) per hour, and assuming she does OK, the double the dose every 15 minutes until she s at 32 per hour. She's been cruising at 32 for a while now, and has about 90 minutes of active infusion left, and then an additional hour of observation.

She has been a trooper so far. Her body seems to be tolerating the ERT very well. We are so proud of her.