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Fresh air & sunshine

Raya finally seems to be saying goodbye to the cold that has stuck around since right after Christmas. (knock on wood) Hopefully it will stay away. In a lot of ways she's feeling MUCH better. She's sleeping a lot better now but she's still waking up crying & screaming within 10 minutes of getting her night doses of meds. I really don't get what that's about since we've been doing them the exact same way & at the exact same time for at least several months and probably more like a year. I thought maybe it was the temperature of the meds that was bothering her since they're refrigerated, so I tried letting them sit out on the counter in the syringes for a few minutes first but it didn't help. She's almost always woken up around that time anyway. She used to wake up and vomit at 10:30 every night, so I think this is just the vomit-free version of that. She's also still not eating much, if anything. Yesterday she ate about 1 1/2 tablespoons of plain Greek yogurt and tasted a few other things which she promptly spit out. I had gotten in the habit of offering her a bite of whatever I'm eating and now she almost always refuses, and when she does take bites she spits them out as soon as they're in her mouth.

Anyway, yesterday was a beautiful sunny day and we didn't have anywhere to go, so the kids and I got to work in the garden. (yes, we are spoiled and it's February and the temperatures are in the mid 70s :) We tore out some of the dead stuff and the things that I had given up hope on getting the kids to eat (i.e. turnips) and made room for the things that it's time to plant: sweet corn, peppers, tomatoes (from seed), strawberries, artichokes, onion sets, watermelon, and beans. Raya was NOT helpful and kept trampling the lettuce and beets but she sure was happy! She did help pick up a few caterpillars though. That didn't bother her one little bit. :) She LOVES being outside and was trying to do whatever the big kids were doing. She also has had a little obsession with airplanes lately. Every time she sees or hears one, she points at the sky and yells, "EH-PANE, EH-PANE, EH-PANE!!!" and keeps repeating it until someone acknowledges her.
I think the hair is a nice touch :)
It's cute but we live 2 miles from an airport so planes fly over at least every other minute. :)

We had a consultation with another OT on Friday. She did one of Raya's pool therapy sessions when her OT was out of town and Raya loves her. I asked her if she wanted to go see Bev and she said, "Yeah, I go see Bev! She like me." It made me laugh because now every time I say "Bev" Raya says that Bev likes her. :) When we pulled up to the clinic, Raya said, "I see Bi-du-dith! Yay!" and she didn't quite get it when I told her that Elizabeth wasn't there. Especially when we walked through the room she usually has therapy in to get to the one that we were seeing Bev in. She had to stop and play with one of the puzzles first. :)
One of the ways that you can tell Raya is uncomfortable with a situation she's in is that she starts getting really wound up. As Bev and I were talking, Raya was running around the room (well, more like jumping around the room) and being really rowdy. It was a pretty tiny room that Raya wasn't used to. She wouldn't make eye contact with Bev and suddenly forgot how to talk. She wouldn't talk to Bev and she wouldn't talk to me. She doesn't know Bev well enough to be totally comfortable with her, so she would try to let her do the therapy techniques on her but when it got to be too much for her, she'd run away or get on the other side of me so Bev couldn't reach her.
The purpose of meeting with Bev was for her to show me some things that I can do with Raya while we are in the process of getting a new OT. Raya didn't cry or anything, she just tried really hard to distract herself from what we were doing with her, and when that didn't work, she would wiggle away and jump around the room some more. At the end of the session, we tried putting her in a swing that makes her whole body go into flexion (think fetal position) and she came unglued. She HATES to be in that position. It makes her very uncomfortable and although after several months of trying, we finally got her comfortable with being on a platform swing, we have never gotten her to go in the "cuddle swing". We talked about a lot of things that we can do with her at home and she explained the purpose behind the things we do at OT in a different way than I've had explained to me before. It all made sense to me before anyway but now I feel like I do understand things better. Sensory issues are so complex and I feel like the more I understand why she is the way she is, the more prepared I can be to help her work through them. Easier said than done, but still doable.

Anyway, Bev got me going on things and although I've been completely unsuccessful with any of it so far, I really am trying (remember, I'm really bad at doing home exercise programs??) and it's just a matter of figuring out what time of day is going to be the most effective for her and getting both of us used to the program. Hopefully soon. The girl is turning into a wild woman. :) She's really been craving strong sensory input and has actually asked me a couple times to put her backpack on her even though she wasn't hooked up to the feeding pump & didn't need to be. She has learned that wearing her backpack helps her feel better sometimes. Smart girl, I know. :) Last night the big kids were in bed and we were on the couch with Raya and the girl was bouncing around like a ping pong ball. She would sit on the couch and bounce herself off the back cushions over and over again. She couldn't sit still for even a second. And on a completely unrelated note, she is still demanding to watch Cake Boss at least 10 times a day. :)


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
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