Day 2 at home

A quick update and sorry no pictures yet.

Even with all of our help, sleep and rest has been a luxury. We have had some setbacks with eating and the blister prevention. James has had touble keeping his formula down. While this is common for infants, it's a very serious deal for his increased nutrional needs. We've had some progress this afternoon and hope to get him back on track.

It's hard to remember exactly at what point Tony went through the worst phase of the blisters showing up. For James, we already are dealing with it. Every few hours we are finding a few more that need to be drained. Most are small, but each one uses fluids, nurishment and must go through a healing process. We continue to try different ways for prevention and care and hope his skin toughens up soon.

At this point we are struggling with how we are going to manage this long term at home, especially with a toddler. Going to hospital care isn't an easy answer either as it seperates family members and adds another dimension to preventing skin damage and caring for him.

It's hard for us to believe it's only been a few days and we are hoping and praying that we can make some headway in his care. Also to have the wisdom to decide if and when to take him back into hospital care and to what extent we will go. Given what we know, his comfort is our main concern.

We as always covet your prayers during this trying time.

Stu, Tashia, Abby and James