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Monday, September 6, 2010

Still alive... (Tues 6-29-10)

Just FYI, we are still alive. Donny flew home last Tuesday and the kids & I started our long LOOONNNNGGG journey home on Saturday. We stopped overnight at my grandparents' house in UT and had a good but difficult but good visit with them, drove a little more and spent Sunday night at my uncle's house, and then I spent a full 13 hours yesterday driving. It was exhausting for all involved but thankfully my cousin Megan was able to ride along and pass snacks to the kids, change the DVDs, keep Raya from choking to death every time she threw up, and open new bottles of Mountain Dew for me every so often. I drank several bottles and ate about 2 lbs of peanut butter M&Ms and chewed a lot of bubblicious to keep myself awake. I don't remember ever feeling so alert for such a long period of time, especially in the car. I credit it in part to the Mountain Dew but probably more so to the high number of people that were praying for me to stay awake all day. Thanks everybody. :)
While we were gone, all of our electronics decided to crap out on us. The hard drive completely died in the computer and the DVD player no longer works. Luckily Donny's friend is an IT whiz and put in the new hard drive before I got home and the portable DVD player we took on our trip can be plugged into the tv. Unfortunately, Photoshop (and every other program & file we had on the computer before) is temporarily MIA so the 3 photo shoots & 1000-ish pictures I took in the last 2 weeks are stuck on my external hard drive that thankfully backed up everything off the old hard drive before we left. Whew.
So today, I've been struggling to stay awake (must be coming off of my caffeine IV from yesterday), trying to finish the unpacking & figure out what to do with my jr. high & high school memorabilia that I crammed into the car to bring home, and taking Raya to one of the appointments that we had to do today because we were gone for so long.

While I'm rambling & waiting for it to be time to start her feeding pump again, she's had a rough weekend. She usually averages (in addition to the normal spitting up) 2-3 large vomits per day, often followed by a minute or so of dry heaving. This weekend, however, she threw up 8 times on Saturday, 7 times on Sunday and 8 times today. I was able to measure how much she threw up once last week & it was about 2 ounces. Even if she only threw up half that much, that would be 8 oz per day for the last 3 days. She only gets about 36 oz per day, so she's pretty much throwing up 1/4 of her calories for the day, not to mention the fluids she's losing. The intensity has gotten worse too. It was scary for me when I was driving yesterday and she would start throwing up because there was no way for me to roll her over or pick her up to keep her from choking. Sometimes it comes out her nose & makes it hard for her to catch her breath. ANYway, I'm hoping that now we're back at home & on our regular schedule she'll get back to her usual 2-3 times per day. Her doctor has been consulting w/other specialists in other parts of the country to get suggestions for things we haven't tried yet because she's just plain stumped. The latest theory is that it could be brain-initiated vomiting instead of stomach-initiated, which gave us another medication option that we'll start in 2 weeks when the doctor gets back in town. I'm cautiously optimistic, mostly because I'm just so tired of all the vomiting. Tired of the laundry, tired of the smell, tired of cleaning it out of the carpet & whatever else, but mostly tired of seeing her like that.
On the bright side though, the people at the doc band place said that she'll have her exit appointment in 2 weeks & be all done with it. I'm SOOOOOO excited to be finished with it. Her head looks 100x better than it did when we started & I'm looking forward to cuddling without worrying about her accidentally giving me a fat lip with her helmet. We'll have a couple weeks in July to give her a little bit of a rest before she has her surgery in August. Maybe by then the throwing up will be under control too.

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