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She said her 2nd word

Okay, so this morning Raya's super-cute tech was doing her vitals and I SWEAR (and 2 nurses & a tech will agree) that Raya said, "Blood pressure!" while pointing to the blood pressure cuff on her leg. No joke, she totally said it. She is a smart girl.

She is definitely making progress. The last 2 days, when she throws up first thing in the morning it's just clear fluid coming out (i.e. whatever saliva she's swallowed) so that's a very VERY good thing. Up until yesterday, every time she threw up it was large amounts of bile in various colors and was quite disgusting. I can handle saliva & dry heaving, which there's still a lot of. This morning she only threw up twice which was a huge improvement from the rest of the time we've been here. Most of the other mornings she's thrown up 5 times before 9:00 and this weekend it was 4-5 times before 7:00 so today was pretty exciting for me.

She's starting on a new medication to try & increase her motility and hopefully decrease the dry heaving and hopefully we'll see better results from this one than the others we've tried. She'll be having an upper GI sometime in the next hour to see if for some reason her J tube is obstructing her stomach from emptying. If it is, that's a problem and they'll have to take her back to IR (interventional radiology) and have them try to reposition it. I'm crossing my fingers that we don't have to do that because it was difficult enough to get it in the first time.
Her weight was down to 9.095kg today which is about 20 lbs 1 oz, so pretty much she's lost about half a pound since she's been here. That's not good but I don't know how or if that will impact us being able to leave. Tomorrow they'll check her electrolyte levels to see if we're doing sufficient replacement for what she loses when we drain her stomach and then it will just be a matter of how long they want to monitor her to make sure we're on the right track.


  1. So, you put a child in a "cage" and she is in the same environment for 10 or more days, hearing the same vocabulary, and she just might start saying many other hospital terms--she knows more that they think! It looks like things are going better for her-hope she goes home this week!
    Love, Auntie Debra

  2. Glad to hear things are improving somewhat. It will be a relief when she gets to go home again, I am sure. Your family needs to be together again after this long away.

  3. Hey, I have been thinking about you and the fam. Sorry that you r back in the hospital. Trust me about the sickness you get from hospitals. Alyssa got one right after her 1st surgery and we ended up staying up to 6 weeks afterwards to make sure we were clear of it. So I really feel for you. I hope you can get to go home soon. Nothing like being home with the whole fam makes things a lot better. You are doing a awesome job and yes you r allowed to go crazy, and complain as much as you want. I am still amazed at how well you handle all of this. Good luck!!! and we r praying for you guys.


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