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Thursday, November 17, 2011

Boring update with no pictures

Well, in spite of my best efforts to quarantine Raya and keep her as germ-free as possible, she has been nothing but a fountain of nasty green snot for the last 3 days. The only places she went outside of the house last week were the fabric store and the pediatrician's office and I have my opinions about where she picked up whatever she's got. I absolutely dread taking Raya to the pediatrician's office. Nobody pays attention to the separate "sick" and "well" waiting rooms and they put well kids in the same exam rooms that the sick kids have been in, so it wouldn't matter if they did. It's that time of year when Crazy Mommy comes out and starts carrying a baggie of Clorox wipes to sanitize public places before I let anyone in my family touch anything. I'm only half joking, just ask them.
Aside from the nasty green snot, Raya's had some pretty good days lately. She had a really productive feeding therapy session on Tuesday and I probably learned more at that session than I have with any other that we've had in the 18 or 19 months we've had feeding therapy. Then the next day, Raya wouldn't eat a single thing until I let her chew on a pizza crust at dinner last night. One step forward and two steps back. We started her on Periactin/cyproheptadine last Saturday to hopefully stimulate appetite but so far, I'm not sure that it's done much for her. The timing of her gross runny nose didn't help, I'm sure. It might be helping though because normally I'd expect her to quit eating altogether while her nose is stuffy since that makes it harder, but she's still eating goldfish & sour cream. :)
Most of the time, I don't allow myself to dwell on the things that frustrate me with Raya. There are certain things that I will probably never understand about why things have gone the way they've gone with her. More specifically, I don't understand the reasons why her stomach that used to convulse at the mere sight of certain things and could only handle an ounce or two of formula per hour (not to mention the 9 1/2 months that we didn't feed her stomach at all) can suddenly handle a bolus feed of 7 or 8 ounces at a time with no problem. I'm trying to just be happy about it and embrace it without allowing myself to feel like I'm waiting for the bottom to fall out but it's human nature to want to know why. When you get SO used to things being a certain way it's hard to accept change, even positive change, especially when it comes on quickly with no explanation. (that applies to most facets of life, not just Raya's stomach! :)

At our last visit with GI, Raya's doctor and I set a goal for Raya to be getting 350 calories a day from real food, and ultimately for at least 180 calories of that to be food that she's eating. Some days I have to not think about that part or it makes me want to cry. You never realize how few calories are in certain foods until you're desperately trying to get your 2 year old to eat 180 calories' worth of SOMETHING. I have yet to hit 350 calories from food in one day and she's been nowhere near 180 by mouth but I've had some days where I've made it to 225, which replaced one of her 4 pump feeds on those days. It's really difficult to blend together real food that's liquid enough to go through a tiny little feeding tube, has enough calories, but is a low enough volume to not make her throw up. I really just need to sit down and figure out a few different options that fit Raya's food tolerances and meet the calorie & volume needs too. I was pretty excited yesterday that the concoction of kefir+avocado that I mixed up for her had enough calories and low enough volume to replace one of her pump feeds. She tasted a couple bites of it too and didn't seem to mind it so that one might be a keeper. :)
Now that we are putting some real food through the tube, I'm also starting to have concerns about possible delayed gastric emptying again. I hope we don't find ourselves going down that road again but for now I'm trying to keep an eye on things & periodically checking the residuals before I start another feed.
I've also had to resign myself to the fact that for now, the foods Raya does choose to eat might gross me out (like plain ol' sour cream) or they might not be very healthy (a little pile of goldfish crackers) but since she gets a minimum of 650ml of formula per day, she is still nutritionally complete so it's not a huge deal if the calories she chooses to eat aren't from nutritious sources. I have to keep reminding myself that toddlers who eat don't eat 100% nutritious food either and it's okay if her diet isn't perfect. It goes back to what I said before about when you get used to things being a certain way, it's difficult to change. I've gotten so used to everything about feeding Raya being so scientific and precise that it's hard for me to let go of that precision and perfection and let it be what it will be.
Hopefully the gross nose will clear up soon so that we can see what, if anything the periactin is doing for her. If it doesn't seem to be helping, we'll increase the frequency to 2 doses a day instead of 1 and see if that changes anything. In the mean time, we're going through Kleenex and hand sanitizer faster than we can say Gesundheit! :)

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