a very busy few days

Riley is doing really well. We've been having some issues with his ostomy bag staying on and not leaking, but other than that, no problems. He began feeds yesterday at noon, 5ml every 6 hours. Did great with that for 24 hours, so today, he moved up to 5mL every 4 hours. He's enjoying that so far too! :o)

Oh, last night, he decided to freak us out with a harlequin sign..basically, the ENTIRE left side of his body got super RED and the right side was normal colored. Now when I say the left side...I mean, it was like someone took a pencil and made a mark right down the exact center of his body, head to toe, and on one side he was red and on the other, normal. It was freaky. It's nothing concerning they said, just a result of a vasomotor disturbance, which I'm not entirely sure what that means, but the nothing concerning part is what mattered most. I wish I had got a picture of him like that just to show how much of a contrast it was, but I was too freaked out at the moment to think of such things.

Found out today, that he will be going back to Duke the week of Thanksgiving for his next surgery. They say it is not likely he will be home for Christmas. :o( This saddens me greatly. And will become more so as the holidays get closer and the stores become full of Christmas decorations.

In other news, I started back to work today. Decided since Riley is here only a short walk away,where I can pop in for visits and feeds easily, that I would save the rest of my FMLA time for when he returns to Duke. It's not a perfect or easy choice for me, but it's the best choice under the circumstances.

So that is the latest. I think that covers most everything! Here are some pictures from the past few days...

freakish long fingers


little sweatpants


hooray for food!