Toronto Day 18

More physio today...we are trying to pack in as much as we can while we are here and before surgery. My photographer Heidi was still here this morning, so more pictures to enjoy...

We were able to get out this afternoon for a while, which always helps. Heidi has gone back home so it's just Noah and I again. Thank you so much for spending so much time here with us, Heidi. Although we had lost touch over the past few years, we were able to just pick up where we left off and had a really great visit.

Nothing much happening at the hospital. Noah's weight is still an issue. He has still been slowly losing weight since we got here. The team had decreased the glucose in his TPN in order to give us more hours off. (The high glucose content couldn't be given over such a short period of time without running into blood sugar issues). So they have slowly been increasing his lipids to give him more calories. However we are getting to the limit of the amount of lipids they want to give him (too much lipids and we will start running into liver problems). Right now it is a fine line of trying to keep his freedom, and yet still get enough calories in him for growth. As much as we are enjoying Noah's new found freedom from pumps during the day, growth trumps freedom...we have added another hour of TPN back so he is running 13 hours. We may have to add back more if the weight continues to drop.

No biopsy results yet...hopefully Monday will bring results and a plan. The team is trying to negotiate OR time for next Friday, but as of yet, it is not confirmed. (Although we still don't know what exactly the surgery will entail, the plan is to block off about 5 hours.) If we can't get OR time, then we will likely have to go home as our surgeon will be away for a couple of weeks after that. That would mean a return trip back in a few weeks once we have a surgery date. I'm really hoping that surgery can happen while we are already here and settled, with a place to stay.