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Monday, June 6, 2011

Rough day for Raya

My girl had a rough day today. It started out fine but halfway through the first hour of church, she started to get wiggly as usual. I took her out so I could refill her feeding pump and try to get her to go to sleep like she's been doing. We started doing laps around the halls like we normally do and I thought she was starting to fall asleep at one point. Then the screaming started. She cried and screamed and squirmed for about an hour. Nothing made her stop, not even going into a quiet room and laying her on the floor. She was doing a lot of reflux swallowing and there were a lot of times when she stopped crying for a minute and then suddenly would scream and stiffen up and arch her back and cry. I felt bad for her. It didn't help that there were a lot of people around who kept walking past us and looking at her and saying things like, "Oh, looks like somebody's not happy." Or they'd touch her arm/leg/back (which she doesn't like) and say something to her. One lady walked past us and looked at us and then got a really smug little smirk on her face when she was walking away and I just wanted to kick her. She's walking past me probably judging me because my toddler seems to be throwing a tantrum, but really she's crying in pain because her intestines are inflamed and she might have an ulcer. People.
Anyway, Cole was giving a talk in Primary so I needed to stay for that but as soon as he was done, I took Raya to the car. The poor girl was on total sensory overload at that point (from aforementioned people who probably meant well) and as soon as we walked out the door of the church, she stopped crying and laid her head on my shoulder. Before we even pulled out of the church parking lot she had fallen asleep in her carseat. I brought her home and put her on a blanket on the floor in the living room and she didn't move a muscle until I had to get her up to go pick up Donny & the kids from church.
She felt better after her nap. She's had less drainage today but most of it has been a dark green color, which (I think) means it's been sitting in her stomach longer. Funny thing about bile, after it sits around for a while (like if I empty her bag into a bottle to measure it and then forget to dump it out for a while) it turns green. Anyway, she's hardly had any this evening which I suppose is a good thing. Who knows at this point.  When I changed her diaper tonight, she was laying on her back and her stomach was completely flat and maybe even a little sunken in, and her stomach has never been like that. She's getting skinny. Something's going on inside that little tummy. Looking forward to seeing the GI doctor tomorrow.

1 comment:

  1. Ever since I found your blog I have loved it. My 5 month old daughter, Lyla, had a GT-Tube placed back in February. Your blog has really helped me keep things in perspective. Raya is absolutely beautiful. I would love to e-mail you and ask you a few questions, but I don't know how to go about it. My e-mail is
    I would really appreciate you taking the time to talk with me. No one else I know has any idea what it's like, and it would be nice to have someone to talk to.


    Rachel C.


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