So we're just waiting now.. for what?! Well his liver is having issues again, he goes 48 hours with out a fever, they take him off his antibiotic, and then bang.. spikes another fever, so we restart antibiotics. He can't tolerate his feeds yet, so we're giving him a break and hoping we can try again in a few days to get him back onto formula.
Tomorrow we are getting a full body scan, check on infections and what not, then we are getting his Hickman put in and the bone marrow biopsy. Don't have a time yet because everyone is out for the holiday. Then we get to wait for results, which won't necessarily change anything, but it will be interesting to find out what his marrow looks like at this point.
Still needing transfusions pretty frequently, his red blood cells do hang on for a while, which is good. Just a lot of stuff to wait and watch for. Sometimes I would like to watch what's happening inside his little body, cause I'm sure it's way more exciting than what we are doing! He's so strong and his marrow has a lot of work to do so I'm not pushing it.. and I don't mind waiting, I just wish he could have gone outside before it started raining!
Alright I'm gonna go run and try to get someone for Henry to play with. :) Tomorrow won't hold much more info.. but Wednesday might.. AND Joel is coming back on Wednesday night!!! YEAH! And then the next day Elizabeth and Mom and Dad! I am sooo excited! Henry and I need the other half of our family!
A bit like a roller coaster ride isn't it. All you can do it hang on, well that is not really true, you've shown that you can do lots more than that. I wish I could send you some of our sun. the last day of fair was beautiful out and I saw the lumber jack show and remembered when you were little and you got the chair they carved in the show, they are still carving the same chair, not much has changed at the fair. Wow you were so little then, ahhh when life was simpler... I Was so inspired by your last blog I sent it to a friend of another faith and she was also inspired by it. You are so helping get the Saviors message out, we are thinking of you every day. Next year...see you at the fair.
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