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Tuesday, February 5, 2013

First, you're all like "eat" and then you're all like "don't eat"

Raya vs. cake, November 2012
Raya has had some tough times in the last week. We've delt with a lot of meltdowns, but Saturday evening was probably the worst one yet. None of the things that usually work helped. It was a solid hour of hysterical screaming, kicking, crying, yelling, and misery for everyone within earshot. I rarely ever get upset about Raya anymore, but this was one of those incidents that's just plain disturbing. It's awful to have to see your child in that kind of condition. All the love, sweetness, and kindness I can give her cannot pull her back from that. When she gets that way, there's nothing we can do except ride it out. If you've never experienced a true meltdown from the perspective of a parent, you won't understand that. I imagine that that pretty much anybody outside of our immediate family who happened to see her like that would instantly write her off as being a little kid throwing a temper tantrum and assume that we're permissive, push-over parents who let her get away with bad behavior. I can only imagine what the security guard in the hospital parking garage and pretty much our entire neighborhood must have thought when they heard her screaming during various meltdowns this week.

Taking food away from her makes me feel mean. Like a really, really big meanie. Taking food away from a 3 year old after you, your spouse & children, and a team of therapists have spent 2.5 years trying to convince her to eat it is lousy. Last week was just plain nuts. She had her GI appointment on Monday, flexible sigmoidoscopy on Tuesday, and then a sedated MRI on Wednesday. Because of the anesthesia two days in a row, she hadn't gotten very many calories so I decided not to cut her off from food completely until Wednesday. We also switched her formula on Wednesday and this time we did it cold turkey. When we switched her from Neocate Jr to Peptamen Jr about 2 years ago, we had to transition slllooooowwwwwwllly over about a month but going from a peptide based formula to an amino acid based formula is easier on the body so it worked.

Except for the part where she's used to eating certain things and eating at certain times of day and now she doesn't get to. That hasn't worked out so well. She is sad every time she asks me for something and I have to tell her no, which happens frequently throughout the day. I feel like I'm pretty tough about not letting things like that get to me, but it's so, so sad when she looks at me and cries, "Mommy, I jee-YUST want a chee-YIP!" This evening she climbed all over me for a good solid 15 minutes and whined and cried that she wanted beans like the big kids were having for dinner. "PLEA-he-he-he-HEASE Mommy, can I have some beans? I jee-YUST want BEANS! I want beans, Mommy!" It's lousy. It's not like she's even asking for junk food, she wants beans and I can't give them to her.

The other hard part is not knowing how long this will last. One thing I've learned from our medical experiences with Raya is that when you have a child with undetermined medical issues, you can't live with timelines. You can't put time constraints on ANYTHING. People ask innocent questions like "How long will she have the feeding tube?" and don't understand that there is just not an answer to that question. Originally, I thought Raya would have her tube for a couple of weeks, maybe a month or two tops. Then that turned into a year or two. When she started eating and then recently started to expand the variety of food she was eating, I thought we'd be safe in thinking that she could be at least mostly off of the tube by kindergarten. There are certain things that are game changers though. Removing all food from a 3 year old child's already severely restricted diet and putting her back onto an elemental formula is one of those game changers. It's hard to say how far that sets us back, but it could add a lot of time onto her tubie years. (yes, years.)

Here's the thing. We know her body doesn't like food. Maybe not ALL food, but a lot of it. We have a list of things we know her body reacts to, but we also know that there's probably more than what's on that list. It's possible that the formula change alone will make a big difference and we will be able to start adding single ingredient foods in fairly soon. However, we'll have to do it very, very slowly so that we can monitor for delayed reactions. That means a single ingredient food for at least a couple weeks at a time before introducing another one. Sort of like what you would do with a baby that's just starting out on solid foods, only with a longer waiting period in between foods. And with lots of prayers that her reflux will stay under control.

If the diet changes we've made do not do enough to control her reflux, her GI feels like we may need to revisit the possibility of doing a fundoplication surgery. This is an anti-reflux surgery in which the top of the stomach (fundus) is essentially wrapped around the lower end of the esophagus and then stitched in place. (Picture a shirt collar being wrapped around a neck and buttoned. Similar concept. )The surgery would tighten the lower end of her esophagus so that stomach contents could not be forced back into her esophagus. It's something that we have taken many measures to avoid over the last 3 years because there can be long lasting consequences to the procedure. That being said, if we do get to a point where we feel like it's the best thing for her, we will do it.

I know that the idea of a child not eating is difficult to wrap the mind around. Aside from breathing and sleeping, eating is about the most normal thing that anyone could ever do. It's hard to fathom that someone could go through life without eating, but it happens ALL THE TIME. There are THOUSANDS of people who, for a variety of reasons, just plain CAN'T eat. And you know what? Worse things could happen. There are much worse things in life than not being able to eat. Yes, it's sad that she may miss out on experiencing things the way other people do since our culture revolves so much around food, but really, of all the body systems to have trouble with, it could be so much worse than GI.

Even if Raya NEVER gets to eat again (which I highly doubt will be the case), she can and will still live a full, happy, and productive life! It frustrates me sometimes that people don't seem to understand that. The idea of needing to "fix" her so she can be stuffed into that box labeled "normal" really bothers me. Of course we hope that at some point we will find enough foods that she can & will eat that she won't be dependent on the tube anymore, but even if that never happens, she will still be wonderful and amazing. At this point, I don't CARE if she ever eats. I just want her to stop waking up late at night feeling miserable, stop bleeding from her stomach, stop having pain in her belly, and stop feeling yucky. I want her to be comfortable physically, and I want her to be comfortable and happy with who she is, regardless of how her nutrition gets into her body. THAT is what is most important to me, and I hope that everyone else in her life can someday understand and accept that too.


  1. It is such a iced blessing that you realize that not being able to eat is not the end of the world. Because it means you kow there are bigger and scarier things out there. I'm sorry you have to defend that to people who don't get it. But I'm thankful that you see all the fantastic things that Raya can and will do regardless of that fact.
    Big hugs on denying food. I can't imagine how heartbreaking that is. It's horrible enough to just imagine it from my perspective. I'm actually thankful that H isn't in that position. She's interested in food, but not like that, she doesn't know she's missing anything. Anyway, bug hugs!

  2. I just left a long comment and of course it erased. Anyway...
    Have you heard of E028 Splash? It is an amino acid-based formula with the consistency and flavor of fruit juice but with the nutritional profile of a medical formula. It comes in 3 different flavors. Here is the Nutricia website about it

    I know from reading the blog, that Raya likes ice cubes, so in addition to simply letting her drink it, you could freeze it in ice cube trays or in Popsicle molds to provide variety.

    I know formula, especially amino acid/elemental formula is super yucky and not the most palatable thing, have you tried refrigerating it so it is super cold and letting her drink it with a straw or a "special cup" that would provide a novelty factor to the experience? Just a suggestion, but honestly, the E028 Splash is much better tasting. : )


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