Refilling the Tank

There's still one thing worth more than gas right now and that's sleep. We caught a few extra hours, but need quite a bit more especially after the last few draining days.

James ate well yesterday but is slower today. His weight gain has stalled for the moment and is at 6lb 8oz. We decided to increase from 26 cal to 30 cal. For comparison, regular formula and breast milk is 10 cal, so we are adding 50% more just to try and get weight gain. We also are using half breast milk and half formula to see if that change will firm up his stools.

He still seems to be in pain and it's tough to tell if it's just normal infant gas/bowel pain or from wounds. We assume that much is from the latter even though it's likely "normal" to him. If/when things get worse we will be considering pain management, but for now he's just getting tylenol.

Yesterday morning was very tough as he had some blisters start on his back. This area of the skin seems to be thinner and they spread fast. We seem to have contained it to a small area, but it's not fun to drain a blister larger than a grape.

Our spirits did get a lift with the arrival of family last night. Today we ventured out of town to the metropolis of Storm Lake for a quick Walmart stop and some good Mexican Food.

We can say it enough. Thank you to everyone that is providing meals, a helping hand, encouraging words, lifting us up in prayer and everything else. You have all been such a blessing to us during this trying time. We are also thankful that most of James medical needs are being covered by insurance and have no financial concerns at this time. Some families with EB kids are paying over a thousand dollars a month to bandage their children, some who will live past 30.

Our prayers right now are for endurance, rest, healing and comfort for James.

Tired, but very thankful,

Stu, Tashia, A Marion and J Glen