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Two things are getting to me. The first things is trying to get Owen to eat. If he would eat, my job would be a whole lot easier. Next week we will be talking about a different appetite stimulant. The one he's on now isn't doing anything.
The second thing is that I have no energy left. I need a nap in the afternoons. His first appointment is usually at 7:15 in the morning. Then I sit in the waiting room for hours every day. You have no idea how exhausting that is. I think I need some exercise. My wife went back home so I don't have the luxury of taking a break to do something on my own.
We'll have a break in a couple weeks. I just have to push on. Owen's laugh and smile really keep me going.
Certainly not ignoring you, just got in. We hope the doctors can figure out the appetite stimulant and diet required. I have seen the exhaustion first hand over the last year and I don't yet understand how the families do it. You really learn what "living on adrenaline" is all about and you have my utmost respect.  I guess all we can offer is a constant place to voice your feelings and our hopes and prayers for the best to come. 
Tim and Vicki
Old, tired, and sometimes broke down. Me, not my car...
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