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Wednesday, December 8, 2010

Hurry up, Monday!

Actually I should say, hurry up Tuesday because I'm really not looking forward to Monday. Monday is {get up early, go to airport, get frisked by TSA, beg them to let Raya & her liquids through security, and sit on airplanes with a fidgity one year old all day} day. Tuesday is when she'll be admitted to the hospital and the real fun will begin. :) Honestly, I'm starting to worry/wonder if they will be able to get all the information they need from the 2 tests they've scheduled, one of which we've pretty much already done with her before. The neurotic mom part of me wants them to do every test they have on her so they don't leave any stones unturned but I keep having to tell myself that they know what they're doing.

In the mean time, Raya couldn't be more ready to go. (me, on the other hand... :) When we came home from the last hospital stay, I wondered how long we would have before our new plan we had enacted would stop working for her. We've made adjustments here & there in the last month but when the only thing we have ever been able to accomplish is a slight reduction in her symptoms, it doesn't take too long for her stubborn little body to learn to work around our treatment plan and do what it wants to do. We've gotten used to and probably taken for granted how well she has gained weight since we started tube feeding her, but in the back of my mind I feel like we're walking a thin line of stability with her. There's always a question in my mind of how long what we're doing right now will continue to work for her before things start to go south again. She's still doing pretty well right now but I can see that her symptoms are starting to evolve a little bit again.

For a very long time now, Raya has been my little vomiting alarm clock. She's very consistent. I woke up this morning to the sound of little happy noises from her bed and no dry heaving or vomiting, and although I like it when she feels good, that's a pretty good indicator that something's wrong. Sure enough, I looked at the feeding pump and we had forgotten to reset the dose on it last night. She probably stopped getting fed around midnight or 1:00, so she had been off for about 6-7 hours. She had gone back to sleep so I just turned the pump on and left her alone. Then almost exactly an hour later, she started dry heaving again. So pretty much, she just can't handle being fed. At all. We've noticed the same thing when we give her a 2 hour break in the evening too. Almost instantly when we turn off the pump, she feels great. Her energy level spikes and she's just as happy as can be.

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