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Food Woes

Food can be such a beast. Sometimes when I think of Raya and food, I picture the food a little bit like a Gremlin. It's hard to say on any given day whether we'll get one of the soft, furry, cute ones or the scary, dragon-looking, havoc-wreaking kind. Some days her food is like this:


Aaaaaand some days her food is like this:


(what can I say, I'm a visual person)

On some days, feeding therapy brings out the best eater in Raya and on others, she fights it as if we were trying to convnce her to eat toxic waste. It can be difficult to know how hard to push her on the harder days because we don't always really understand why she's fighting it. It's easy to forget that a child being able to talk does not equal a child being able to verbalize complex concepts and emotions. We can't ask Raya why she's suddenly refusing to eat something that she would normally not have a problem with and expect an answer like, "Well, the last time I ate that food, I saw a hair on my plate and it grossed me out and now that's all I can think about when I see that food on a plate." or "I know you dragged me to therapy and I'm required to sit here for the next 45 minutes but I'd really rather be playing right now so I'm just doing what I have to do to get through this session and then I'm outta here." or "When I ate that food yesterday, I started experiencing severe heartburn 3 hours later and felt bloated so I am concerned that the heartburn and bloating were because of eating that food and I'd rather not eat it again for a while." See what I mean? It's laughable to think of a 4 year old giving a logical response that actually explains why they're refusing something. We're LUCKY if we get a verbal response at all and if we do, it's usually something like, "Because it will make my tummy hurt." or "Because my tummy doesn't WANT food." Those responses seem explanatory enough but coming from a 4 year old, they could also mean that she just doesn't want to stop doing what she's doing long enough to eat or that she's mad that we're giving her applesauce when she'd rather have potato chips.

The last 2 feeding therapy sessions have been about as polar opposite as they could possibly get. The Friday after Christmas, I asked Raya what she wanted to eat for lunch at therapy. She asked for a baked potato so I made her one (thank goodness for microwaves) and off we went to therapy. The days & nights all run together so I don't remember exactly what happened the night before but I remember that she had a rough night and she and I slept on the couch. (which is getting much more difficult for this 34 week pregnant mama to do!) A bad night the night before a therapy appointment can mean a less than stellar therapy session but it can just as well have no effect on how the session will go.

She had been in a great mood that day, especially considering that lack of good sleep the night before. I didn't expect such an awful therapy session. She really was not her usual self. She was more like how she used to be when she wasn't getting OT and when we hadn't found a good way to consistently help her get good sleep at night. Her attention span was literally 2-3 seconds at a time. The chair stayed still but her bum did not. She wiggled more than I've seen her wiggle at feeding therapy in a very long time. She actually fell off of her chair twice because she was being so wiggly and she can unbuckle the seatbelt so we don't bother with it anymore because it's too distracting.

Then there was her interaction with food. She didn't really even want to look at it. She seemed fine at first, but it became clear pretty quickly that eating was not really on her priority list for that day. A lot of time was spent poking at the pieces of potato and trying to sneak turns on the iPad even though she hadn't taken a bite. There was also a lot of time spent holding food in her mouth. This picture pretty much sums up the whole session:
It took us 10 minutes to coax her into taking that bite and another 10 minutes for her to decide she was ready to swallow it. Getting her to take a sip of water was like pulling teeth. (incidentally, that's exactly what her teacher said about snack time at school today...) She bounced around like a little ping pong ball and barely ate any of the food she had asked me to bring. I was SO relieved when FT was over and it was time to move on to her OT appointment. It's hard to adequately express with words what one of these feeding therapy sessions is like on a bad day and I wish I was better at it. If I had to sum it up with one word, the word would be EXHAUSTING.

In stark contrast, the following week (this past Friday) was one of the best eating days she's had at feeding therapy in a long time. She had already eaten about 200 calories' worth of potato chips for breakfast (don't judge, it's something quick & easy that she likes and doesn't make her sick). I had not given her formula before therapy because I wanted her to eat more food at therapy, so she was there on a pretty empty stomach. By the end of the session, she had eaten:
  • a whole 4oz cup of strawberry flavored applesauce mixed with 1 tsp olive oil for added calories
  • a whole baked potato (a very small one, about 70 grams) with 2 tsp of her safe margarine
  • a Gerber Graduates fruit twist (to practice eating something that's hard to chew)
  • 1 ounce of water
The calories for the session totaled about 225 and she ate almost a cup of solid food in less than an hour. What was probably just as exciting was that she was HAPPY the whole session. She was excited to be there, excited to eat her lunch, excited to play games on the iPad, and just flat out happy. There was no falling out of the chair this time either and she sat as still as she ever does. The only thing she seemed to have trouble with was drinking water. I've noticed that she's kind of forgotten how to take a drink lately. Instead of tipping the cup and pouring the water into her mouth, she tips the cup part way and then kind of slurps the water into her mouth. More often than not, doing that results in her inhaling water. The more she does it, the more hesitant she becomes to drink water. (subconscious way of protecting her airway) It was very exciting to see her happily eat all of that food, as it always is when she has a good mealtime.

Holding that fork like a boss.

When she finished eating, I asked her how her stomach felt. With a smile on her face as she happily played her game on the iPad, she said, "It hurts."  To which I replied, "Well Raya, if you're eating food and your stomach starts to hurt, you need to stop eating!" I guess that subject hasn't really been addressed yet. After that, we had OT and due to the large volume of food she had eaten, we didn't dare do anything too lively with her.

On the drive home from therapy, her demeanor changed to a much more serious tone. I'm sure it was partly due to being tired and riding in a nice, warm car snuggled up to her blanket, but her stomach was bothering her too. We went home and dropped Kaida off and picked up Donny so we could go to his ortho appointment and see what the MRI said about his sore shoulder. Since she had finished eating just before noon, I decided to wait until 3 before plugging her in to the pump. We normally wait 2 hours after a formula feed ends so I figured I'd give her an extra hour for the solid food. I inadvertently ended up waiting longer than that and when I told her it was time to get plugged in to the pump, she told me her stomach wasn't ready for formula yet. I figured that since it had been over 5 hours since she finished lunch, she'd be empty and hungry and ready to go so I decided to check with a syringe and see how much was there. I stopped after I got about 45ml of food. I have no idea how much was still there but I could see potato and flecks of the fruit twist thing so it was definitely her lunch. Unfortunately at that point, we HAD to connect her to the pump because we still had to get 700ml of formula into her (about 24 ounces, or 3 feeds of 8 oz each). Since each feed takes 2 hours and we give her a 2 hour break in between, it was well into the wee hours of the next morning before she finished all of the formula she needed for the previous day.

I saw this on facebook today and it made me think of Raya :)

SO. I'm sharing this because I find myself going around in circles in my mind about it quite often these days. The lunch she ate on Friday at therapy is a pretty good lunch for a kid her age at 225 calories. If she ate 3 meals of 225 calories each in a day, that would be 675 calories. Throw in a couple of 100 calorie snacks and that's 875. If on top of that, she drank a couple glasses of milk (hypothetically, since she's allergic to milk) that would add about another 200 calories and put her right at 1075. Currently, her daily caloric intake goal/requirement is 1100-1200 if we want her to not lose weight, so if she ate those 3 meals & 2 snacks per day, she'd be pretty much on target with her caloric needs. However, given that it takes her 6 hours or more to move a 225 calorie meal out of her stomach (and pardon me for saying so, but) how in the HELLLLLLLLL is she supposed to do that?? How in the world will she EVER be able to eat 3 meals and 2 snacks a day PLUS drink all the water she needs if it takes 6 hours for just ONE of those meals to leave her stomach? THIS is why it's hard for me to fathom that she will be getting off of the feeding tube anytime in the near future, and that doesn't even take into account the fairly extreme dietary limitations she has because of her food allergies.

Lest anyone should think I'm being a pessimist, just because it's hard (or darn near impossible) for me to imagine Raya physically being able to eat enough food to not need the tube does NOT mean that I don't have HOPE that she will be able to or BELIEVE that she will be able to. This is where I see things going over the next couple of years. We will continue adding in new foods one at a time to expand the nutritional profile of what she is able to have and to find out what foods work well for her and what foods do not. As she is able to tolerate a wider variety of foods, we will start doing partial blenderized diet and see how her stomach tolerates that vs just eating the whole foods. With that, we can also see how she does with weight gain when some of her formula calories are replaced with blenderized whole foods since we have never really had that opportunity. I am not saying that formula is bad. If you look at the number of people of all ages who are able to live and thrive on formula when they cannot thrive off of food for one reason or another, you can't very well deny that formula IS a good thing. Raya would not be here if it wasn't for formula and she is clearly thriving on it. What I am saying is that I think that before we can expect Raya's body to be proficient at digesting whole foods, it will need "practice" and I think that blenderized diet is the way to do that in addition to whatever food she does eat orally. Eventually, I think that she will get to a point where she is cognitively more able to understand the way that she has to eat in order for her body to process her food, and better able to understand and respond to the sensations and signals she's getting from her body. At some point, the tube will only be used for minimal support when she's not feeling up to eating enough or to make up a few extra calories or some fluids at night, or to take her nasty tasting medications through. And eventually I do believe that she will be able to remove it, but it's going to be a matter of years still. I don't love that, but I have accepted it and embraced it and I'm okay with it, and I only hope that the people who are most important in Raya's life can do the same.

Someday, Raya and food will be friends.

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