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No, really, she is a sweet and wonderful girl

I think I've scared people by posting about all the mischief Raya gets into (because lately there's been so much of it). Like how on Thursday morning I went upstairs to print some papers and when I came back down, she was sitting on the floor in the living room (the only place in the whole downstairs where there's a rug) helping herself to the Country Time lemonade mix.
While I was cleaning it up, her OT called and said she'd had cancellations and wondered if I could come in early. I believe my exact words were, "Sure, let me finish vacuuming lemonade mix out of my couch & rug and then we'll be right over."
Raya has suddenly taken a liking to powdered things. Last week she ignored my warnings and took a big old lick of her handful of flour. Then there was the powdered sugar on Wednesday, then the lemonade mix on Thursday, and this morning it was some chocolate "Morning Moos" drink mix powder. I have GOT to get a lock for the pantry door too because she's become rather stealthy at pushing chairs across the kitchen floor whenever I leave the room. I caught her sitting on the couch gnawing on a Now and Later yesterday. I didn't know we had any of those but she found them by pushing a chair into the pantry, putting the stool from the bathroom on the chair (which is already a counter-height chair, by the way), and getting into a bag of candy way on the top shelf from a birthday party somebody went to last summer.
So yes, there is mucho mischief. BUT. She is also a very sweet, cute and funny girl. If you're not trying to get work done that takes your immediate attention away from her, she's quite fun to be around. We've been making a lot of Tubie Friends lately and it has rekindled her love for her bear, Tubie-rina. When I vented Raya's stomach before her nap yesterday (i.e. burped her with the G tube), she decided that Tubie-rina needed to be fed and burped too and insisted on having the venting tube & syringe connected to Tubie-rina's G tube. I obliged her and got a good giggle when I saw her pushing on Tubie-rina's belly just like I push on hers when I vent her.
Things like that make me laugh, make me sad and melt my heart at the same time. Having a 2 year old that knows how to burp a teddy bear through its G tube is sad but also somehow adorable. The fact that she got mad when no loud burping sounds came out of Tubie-rina like what comes out of Raya's tummy was hilarious. I need to go to Build-A-Bear and see if any of their little sound boxes make burping noises. :)
This morning we had to take my car in to get something fixed and on the way home (at 7:00) she said, "Mommy, I eat sumpeen?" in her very sweetest voice. I told her, "Of COURSE you can eat 'sumpeen'! By all means, eat something!" When we came home, all she wanted was cold refried beans straight from the fridge, so that's what she got. I can't watch her eat cold refried beans at 7:00 in the morning. It's gross. It made her happy though and those are good oral calories for the day. But still gross.
She's getting back on the right track. (knock on wood) I've been venting her more, using Farrell valve bags to vent during feeds when she's asleep, and not really stressing about oral intake. We can tell that she's feeling better because aside from her strong need to climb on things and eat various powders from the upper shelves of the pantry, she's been much happier and easier to deal with this week. As long as you don't let her out of your sight for more than a minute. (see, there I go again...this must be why it's hard to find a babysitter for her...)
I've had such a busy week this week between school, work, family, appointments, a little car problem, and the fun things I wanted to fit in, but I really love my life right now. Aside from having a wonderful husband and 4 awesome kids, I'm so blessed to be a part of a community of support (that just hit 7,000 "likes" on facebook today. Yay!) where I can share what I've learned through our own experiences as well as from other tubie mommas with people who are just starting out on their feeding tube journeys. It gives meaning to the struggles we've been through with Raya when I'm able to share our story with other people facing similar struggles. Hearing what other people go through also keeps me humble and makes me thankful that what we've dealt with has been mild compared to what it could have been. On top of that, I have the privilege of helping to "take the fear out of feeding tubes, one Tubie Friend at a time" by volunteering for Tubie Friends. The kids who receive these stuffed animals remind me that I can do the hard things I'm trying to do right now and help me to keep my life in perspective. If you're ever struggling with things going on in your own life, the best remedy is to get outside yourself and do something for other people. There's no way you can feel sorry for yourself when you see what chronically ill children go through while keeping a smile on their faces. So on that note, I'd just like to say that although this wasn't where I pictured myself before Raya was born, I love the "tubie" life for all of the positive blessings & wonderful people it's brought into my life, and so thankful for my sweet girl who is the reason we're living the tubie life.


  1. You, my amazing daughter, are a blessing in the lives of many others as they learn about this tubie lifestyle--keep up the good work!


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