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Wednesday, June 8, 2011

I think she's trying to give ME an ulcer

Remember when I flew Raya all the way to Ohio for motility testing, catching & cleaning up puke all the way there, and she suddenly stopped vomiting the moment we checked in to the hospital? Well, apparently she's good at being on her best behavior on testing days because today she's right back to her old tricks. When I woke up this morning she had 105ml in the bag, and in spite of having the tube clamped for a total of 7 hours throughout the day (meaning she wasn't draining anything during that time), she still managed to hit 360ml (12 oz).
She also was completely uncooperative for her PT this morning. She wouldn't even let her TOUCH her for the first 15 minutes. I think I might have to get Raya an iPod Touch now too because that finally distracted her enough that she could ignore the stretches the PT was doing with her. That would have been GREAT to have at the hospital yesterday too. :) She had a lot of post-anesthesia/traumatic hospital experience clinginess that made doing things like making dinner & cleaning the kitchen floor a little more difficult. I think it was still better than her last post-anesthesia day though. The doctor said she'd call me when the biopsy and bloodwork results come back and that it should be by Friday or Monday at the latest. In keeping with Raya's history, I'm expecting those to all come back normal too. :) I have been a little surprised at how emotionally draining this simple little endoscopy has been for me. I think it's because I get to a point where I resign myself and make peace with the idea that we may never get the answers we're looking for and that's okay. Then something will come up like this mess with getting the GJ tube changed. Raya ends up having to have tests done, and I'll start to get my hopes up that maybe THIS time they'll see something they haven't seen before or something will finally click and they'll figure "IT" out. Then everything comes back normal (even though it's obviously NOT normal to have 15 ounces of bright yellow fluid coming out of the hole in your child's stomach every day) and I have to start convincing myself all over again that it doesn't matter if we ever get the answers we want as long as Raya is continuing to grow & develop and be healthy.
Sometimes I think to myself, why are we even still digging for answers? Why keep doing tests that we've already done before? I guess the answer to that is that it's only natural to want to know everything. That's just the way God made us. We have an innate desire to learn and solve problems and it's frustrating when there's a problem that we can't solve on our own or with help from other people. But, like I said, whether or not we ever find out what has caused all of the symptoms Raya has, the most important thing is that she is continuing to grow and develop and have the best possible quality of life in spite of her circumstances.
Part of that is making sure that our family's world doesn't revolve around her "problems". For example, I felt so bad yesterday when I realized that because of Raya's endoscopy, Ashtyn missed her activity day for church because I had to take the kids to their cousins' house and we didn't get home until an hour after it was over. We can't be in 2 places at once and obviously some things are more urgent than others. It's hard to make that separation, especially when so much of our schedule is dictated by her therapies and doctor's appointments and just by the day-to-day aspects of her care that are different from a baby without a feeding tube. I am definitely trying to be more conscious of that though. There is a fine line between making sure that her special needs are met and not participating in life because it's just easier not to. Does that make sense? Well, anyway, I think Raya and I are both on our way to getting over this endoscopy and moving on with life. Hopefully we won't be doing that again anytime soon.

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