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Saturday, January 7, 2012

Let her eat rice

Sometimes it seems like the more I try to understand, the less I know. I start to think that I'm figuring things out and then find out that I really had no idea. Case in point: rice. Back in the beginning, before we even took Raya to a GI specialist or had her 2 month check-up with the pediatrician, I had tried adding rice cereal to Raya's milk and feeding it to her from a bottle to see if it helped with the reflux. It didn't. Then the GI doctor had me add rice cereal to the milk to see if the added heaviness of the rice cereal would help the milk stay down and if the added calories would help her gain weight. Instead, she vomited during and after every feed and was even more miserable. With the placement of the NG tube came elemental formula and we avoided all food for a long time as part of our efforts to get the vomiting under control.
A little over a year later, she started to be interested in food. We proceeded with caution as you would with any child who is just starting out on solid food. She would eat a little bit of black beans, so one day I put some rice in the blender and added a little to her beans. She smeared it all over her face & arms, and when I washed it off, her skin was bright red wherever the rice had been.
Since she'd had an obvious GI reaction with the vomiting, and an obvious skin reaction, I was SO sure that the allergy tests would be positive but they weren't. There wasn't even a tiny little level of reaction on her blood test.
Even though there have been times when we suspected that a symptom she was having may have been related to a food she'd nibbled on or been fed through her tube, when the allergy tests came back negative, I kind of threw up my hands in frustration and decided that if she wants to eat something, she can eat it. (within reason, of course) Unless it's something that's beyond her current capability to eat (such as things that require a lot of skilled chewing :), if she wants to try it, I'll let her try it.
Tonight we had Hawaiian haystacks for dinner (white sauce+shredded chicken+curry powder served over jasmine rice & topped with various toppings). Donny and I got bowls for all the kids and ourselves, and Raya sat in her high chair and demanded that I "dimme dat! my bowl!" After I reminded her to use her manners, I put a little bit of rice and a little bit of the chicken sauce in a little cup for her and kind of balked at the idea that she thought she wanted some of what we were eating. She's always been grossed out by rice, in part because it's sticky when she touches it. Much to my surprise, she ate it.
All of it. And then demanded more. (she's really into demanding things this week) I reminded her to use her manners again and then dished her up another little spoonful after she said please.

She ate that too. Then she politely held out her cup and said she was done. Then she threw her spoon on the floor and yelled, "MY 'POON! DIMME IT!" Silly girl. She'll learn quickly that that doesn't work. :)
There's just a lot that I don't understand. I don't understand how she could seem to be allergic to things but then not be. I don't understand how things could be so bad for her for such a long time and then be so good with no real explanation. I don't understand why she doesn't comprehend hunger or associate food with it. But then I tell myself that we don't have to understand everything in order to recognize blessings and be grateful for them. I do, and I am.
So I've been thinking & reflecting a lot this evening. The last couple of days, really. I'm feeling kind of humbled, actually. I'm sitting here with a pile of lab reports on my lap. Most of them are good. The metabolic labs that have always come back abnormal are normal now, and that's good. There's one report here that's full of numbers, letters, and words that mean absolutely nothing to me. Even the almighty bing & google can't help with this one. It's just another in a very long line of lab reports that may or may not ever uncover that one magical diagnosis that will explain or give meaning to everything that we've done in the last 2 years. We'll see another specialist in a couple weeks who may or may not be able to tell us what this lab report means, if it actually means anything at all. I realize I'm being somewhat cryptic, but honestly I don't know what I'm looking at so I have no information to share until the specialist shares some with me.
I've realized recently that I have become rather cynical about a lot of things involving Raya and have lost the ability to empathize with other people on a certain level. When I was on the phone with one of Raya's doctors a couple nights ago and she told me that this lab report needed to be evaluated by another specialist, I almost *almost* got tears in my eyes. Almost. Then I reminded myself that 1. Raya is doing great and is healthier than ever, and 2. lab results have never given us any useful information worth getting upset over before, so I have no reason to believe that this one will be any different. Cynical of me, perhaps, but cynicism can be a great coping mechanism, especially when you're waiting for someone to tell you what impact a piece of paper may or may not have on the future.
The empathy thing is something that I need to work on. The other day, a friend said something about having to take her baby to get shots and how she just sat there and cried the whole time her baby got shots. On the outside, I nodded my head and agreed that it's hard to see your baby get shots and cry. On the inside, I was having flashbacks of a miserable night in a dark cluttered storage room that the hospital used as a procedure room, where I helped 3 or 4 other people pin down my screaming baby for 2 hours while multiple people tried and failed several times each to try and start an IV on her. It doesn't mean that what upsets other people isn't significant or legitimate to them, it's just hard to feel the same level of empathy that I used to feel because of what I've seen in the last 2 years. It's not that I don't care, it's just that things that used to seem like a big deal just don't anymore and it will take work for me to get that back. Then in other situations I feel like I have a much greater level of empathy. Ugh, this medically-complex parenting can really mess with a girl's mind! :)
I don't know where I'm going with all of that. Sometimes I just let my mind wander where it will and a few lucky people get to read about it, ha ha. :)

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