Tuesday, July 1, 2014

Getting ready for the big weekend.

A quick little update. 

Last weekend we traveled north to spend time with cousins and had a great time. 
We've been watching the World Cup and cheering team USA (and team Bosnia, but they were out earlier than hoped.)
Tonight we saw Transformers 4. Jack liked it, but it was a long movie. He ate a whole thing of popcorn and downed it with you guessed it -- Coca Cola. 

He's eating OK, I think. It's hard to get a feel for how much he eats. Of course he's not hungry when it's meal time, so 45 to 90 minutes after everyone else eats, he wants something, and usually not what we had. But half a taco here, a bowl of cereal there, granola and raisins in between, and he seems to be doing ok. I just wish he'd wake up one morning and ask for scrambled eggs and bacon. 

No diarrhea any more, that seems to have stabilized. One of his medicines is drying out his skin pretty bad, so he gets nightly "lubrication". Otherwise he starts looking like a little lizard, molting his face. He doesn't mind, except in the mornings, his lips are painfully dry, and Chapstick doesn't work quick enough. 

Plan for the next few days:
- 4th of July festivities with family
- Monday: surgery to put in a replacement central line, then weeks two and three of immunotherapy back to back. 
I'm a little concerned about his nutrition during those two weeks, but I guess there's always a feeding tube option. Plus he seemed to eat once a day during the first week. 

Onwards and upwards. 

Today I'm grateful for:
- nice, safe weather. It's tornado season and I'm thankful we don't have that to contend with,
- World Cup. Not only did team USA perform admirably (especially our goalie, wow) but it really gave us an excuse to spend even more time together. 
- Panini soccer stickers. I'll take a picture soon so you know what I'm talking about. They're similar to baseball cards but much better since they're European. We've been collecting them and trading with people on craigslist. I grew up collecting them and am glad that I got to share that part of my childhood with the boys. 

(Notice how I said "a quick little update"? I lied:) )

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