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Wednesday, January 18, 2012

Good strange and not-so-good strange

Good strange:
I thought about not making this information public yet because it seems WAAAAAYYYYYY too good to be true, but for the last 3 days in a row, Raya has eaten (WITH HER MOUTH) over 300 calories per day. Even more important than the number of calories is the fact that the variety of foods has increased. In other words, she's not getting ALL her calories from sour cream and wheat thins anymore. :) In the past week, she has eaten YoBaby whole milk yogurt (blueberry flavored), vanilla-flavored snowman marshmallows (can we say "chubby bunnies"? :), pita chips, strawberry Nutrigrain bar, Honey Nut Cheerios, rice (guess she's not allergic after all), refried black beans from Chino Bandido (and if you've ever eaten there, you'll understand why this can be classified as strange), pasta (a first), plain Greek yogurt, peanut butter, and Gerber vanilla custard with bananas. It is SO strange to see her eat food, and to eat THAT MUCH food in one day.
I really think the Periactin is responsible. She even asked me for a sandwich today. 1. I didn't even know she KNEW what a sandwich was (I still don't) and 2. I've tried to give her sandwiches before and she didn't like it. After waiting for 2 years for her to eat a decent amount of food, it is really weird to see it actually happening. Notice, however, that there is a complete lack of fruit and vegetable in that list of food. Keep in mind that although 300 calories is great, that's only 1/3 of her daily requirement and she has a LONG way to go in quantity, variety, and efficiency, but the progress is encouraging. (and by efficiency, I mean that she needs to be able to eat a container of yogurt in less than 45 minutes, a pita chip in less than 15 minutes, etc.)
Tomorrow should be an interesting day. The other weeks she's been on Periactin, her food/calorie intake on day 4 of the cycle has been drastically lower than the first 3.
Okay, so the next good strange thing:
The girl actually let me feed her a whole container of baby food today. Why is that strange?
1. She has NEVER in her whole 2 years, 2 months, and 8 days of life allowed me to put that much of ANYTHING in her mouth. I have literally never been able to feed her more than 3 or 4 bites of something before she refuses to take any more from me, so this was strange.
2. I've never fed ANY 2 year old a container of baby food before because most 2 year olds don't eat it anymore. :)
3. She acted really strange the whole time, as if she had to keep herself REALLY busy in order to avoid thinking about the fact that I was feeding her and she was eating. She wouldn't make eye contact with me and she was babbling and squirming around the whole time. None of my other kids ever did that when I was feeding them either.

Another good strange thing is that I now am at the point where I actually need a dietitian to help me figure out what I should be feeding to Raya and how to combine oral feeds with blenderized food and formula through the tube. As in, there are actual ORAL feeds taking place in which she is taking in a significant number of calories. There are a lot of numbers involved in feeding Raya. I am a detail person and I can't just wing it. I HAVE to know how many calories she's getting and from what sources, and I can see that it would be really easy to drive myself crazy with all of that. So I will be calling tomorrow to schedule a visit with a pediatric dietitian and hopefully they can give me a little more guidance moving forward.

Not-so-good strange:
Her stomach is bleeding again. I noticed at least 2 or 3 weeks ago that the drainage that was on her gauze/g tube pad had gotten really dark in color and looked like a scab. (excuse the graphic description) I hadn't really thought too much of it because I thought maybe it was the food I had blended that was seeping out and turning dark when it dried. Then I changed her G tube a couple days ago (see video here :) and when I took the old tube out and put the washcloth over the stoma so we didn't make a mess, there was fresh bright red blood on the washcloth. That made my heart sink a little. We've been down the bleeding stomach road before and it was not fun. It's been a couple days and it's still seeping small amounts of fresh blood.
I know we've been lucky that we haven't really had any granulation tissue problems since right before she got her GJ tube in Oct. 2010. A lot of kids fight granulation tissue & infections at their tube sites all the time. The thing that I don't understand is why all of a sudden she's bleeding again. One thing I learned from our previous ordeal with bleeding granulation tissue is that GT can be like an iceberg: what you see on the outside might be just a tiny fraction of what's going on on the inside.
The good thing is that she doesn't have any granulation tissue coming through around the tube, she hasn't had any fevers or signs of infection, and she's not throwing up blood any blood in her stools that I can see. Those are all very good things.
I'm feeling very lucky tonight because I emailed her doctor to give her an update on everything and got an email back an hour later that all I need to do is give the nurse our pharmacy information & she'll call in a prescription for Carafate (an ulcer med) so we can try and nip this in the bud before it turns ugly. Hopefully we can get it healed without any infection or irritation in her stomach.

A very bad strange was that she may or may not have taken a swig of nail polish remover this afternoon. I didn't see her do it but I walked into the bathroom after she had disappeared for a minute and she held up the bottle of nail polish remover with the lid off and said, "Here, Mommy!" She didn't have a nail polish remover mustache or anything, but her breath definitely had a perfume-y smell to it. Fortunately I gave her lots of water like the bottle said to do and she's been fine. We're definitely running into issues with the fact that she doesn't seem to discern between food and non-food flavors. Gotta watch that girl like a hawk! (and why don't they put childproof caps on nail polish remover??)

The other strange thing that I'm not sure if it's good or bad is that her energy, mood & activity level has been really up & down lately. The only theory I have is that until recently, her diet has been 100% consistent. Her blood sugar has probably been fairly consistent because her feeds are always the same thing in the same amount, but this week she's eating a lot of food that she's not used to having in her system so maybe her energy bursts are because of the food she's eating. (and as a sidenote, I just did a double-take after typing the phrase "because of the food she's eating". Yes, my child that I never thought would eat anything is now eating.)

Well, that's about it for now. Hopefully there will be nothing further to report on the bleeding stomach.

1 comment:

  1. Wow that's so awesome that Raya is eating food! Good luck with counting calories and everything! I'm glad the med is working and that she has that desire to eat! Good job!


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