Taco Bell Therapy for My Tube Fed Son

posted in: Apollo | 25

For the past several months Apollo has watched with interest as a new Taco Bell has been under construction. We have to drive by it every time we head into town and he has asked countless questions (including what kind of food they serve). Back in December I told him once the Taco Bell was open I would take him there to eat.

Taco Bell-tube-fed-boy

Naturally, it opened in January, when I was committed to eating no sugar. I knew the probability was high that the food contained sugar, so told Apollo we would have to wait until February. He has practically been counting the days until January was passed so I could finally take him to Taco Bell.Taco Bell-tube-fed-boy

Yesterday was the big day. I headed out with Tilly, Enoch and Apollo for our big adventure. I had no idea what Apollo might eat there, so I ordered one crunchy and one soft taco. After we ordered and headed to the table he began crying. “What’s wrong?” I asked.

“Why didn’t you give me the food I ordered?” he cried.

Taco Bell-tube-fed-boy

Poor kid. He has very limited experience with eating out. He had no idea we needed to order and then wait. Once he realized the food was coming and he only needed wait for it to be fixed, he was happy again.

boy-running-in-resteraunt

Once he heard our number called, he took off running to “help” Enoch bring us our food.

Taco Bell-taco

What I didn’t realize when I ordered was I had made a major tacticle error. There was cheese. In Apollo’s taco.

Shocking, I know.taco-bell-tube-fed-boy

I painstakingly picked each and every shred of cheese out of Apollo’s taco. Then he was ready to try it.

I think these photos pretty much speak for themselves. He loved the taco. He at every. single. bite.

Then I bought him another taco, this time asking Tilly to order it with “no cheese”. Apollo was thrilled.

They make them with no cheese?” he asked in shock.

For you buddy, they’ll hold the cheese.

Taco Bell-tube-fed-byIn the end, Apollo ate two full tacos (every bite) and some chips.

Checking the Taco Bell website I discovered a crunchy taco has about 170 calories. That means Apollo consumed 340 calories, plus whatever was in the chips. Whoo-hoo! That’s a win in our house.

Introducing Apollo to new foods, enticing him to try them, this is quite literally therapy for Apollo. I can remember back in the summer of 2012, he had just had his g-tube placed, and we were desperate to keep him eating orally. A small piece of chocolate. A potato chip. These were all small (and big) victories. Sometime in 2013, we got him eating Chinese food. He loves lo mein and sesame chicken.

Apollo spent four or five months in 2013 going to group feeding therapy. We had some small successes, but in the end, I decided watching the other kids be fearful and leery of food was doing more harm than good, and we stopped going. Apollo was the youngest in the class and I wanted him to have more positive role models. This was no fault of the therapy, I just didn’t feel like it was the place for him.

So we work at home. We got him to drink juice in 2013. His dietician at Children’s didn’t want him drinking water (his sole beverage at that time). “Anything has more calories than water” she told us. So many foods he now consumes have stories behind them. Nothing has ever been easy with Apollo, even the most simple of things, such as feeding him.

So there you have it. We can now add Taco Bell tacos to the list of food Apollo eats.

December 16, 2014 Apollo saw his doctor and we discussed his weight. He has been eating so much since getting his tonsils removed, I was eager to talk about weaning him off of his g-tube feedings. At that point he was less than a pound away from when the doctor would “consider his growth a steady, upward swing” and not just a temporary spike. Once he hit that target weight, our doctor would be confident he growing and gaining well and we could talk about (very slowly) weaning at that point.

Apollo is now two pounds less than he was at that visit six weeks ago.

So it’s back to the roller coaster that we never really left.

 

Facebook Comments

25 Responses

  1. I really love seeing this kid eat. I wonder if he’d go from tacos to wraps?

  2. If he eats Taco bell, I see nothing wrong with it, Calories are calories. It is not the healthiest food, but he needs to gain weight. I used to be anti fast food. That lasted until I went back to work. 😛

    • bakersdozenandapolloxiv

      I asked Tilly and Enoch if they had ever been to Taco Bell and they said “yes, Grandma took us there”…my grandma who died in 2007! The only one who eats fast food in our house is Apollo 🙂

  3. That’s great! Maybe he would want to “play” taco bell at home and make his own tacos? Great job Apollo!

  4. That is great! I have a picky eater and any new place he will eat at when we are out or traveling is a win for us.

  5. Contact Taco Bell, tell them this story, and ask for a free supply! 🙂

    • This was my thought, too. Or maybe a role in promoting the restaurant. Though, if you are not fast food fans, you may not want to encourage others?

  6. That is amazing! Every step, no matter how small, gets you closer to the goal.

  7. I bet you could find some copycat recipes on Pinterest and try having a Taco Bell night at home. I know they sell the Taco Bell taco seasoning and salsa in local grocery stores.

    • bakersdozenandapolloxiv

      We have tacos on a regular basis, so I’m not sure what was so appealing about Taco Bell…if it was the novelty or what, but I’m not complaining!

  8. Way to go Apollo! I’m not a fan of Taco Bell but every now and then I’ll have something from there. I’m with Apollo – hold the cheese!

  9. Could the no-sugar month have contributed to his weight loss? I really want to cut down sugar in my diet for general health/inflammation, but I struggle to maintain weight and it drops like a rock if I forego sugar.

    • bakersdozenandapolloxiv

      Apollo didn’t participate in our month of no sugar (only Tilly, Jubilee, Hezekiah and Tucker did). We don’t limit any foods Apollo eats. We are not anywhere near a point that we can do that.

  10. I’ve joined your world. Sigh. We just got back from Hong Kong with our son and he has many food aversions (like anything not puréed). When we picked him up, he was eating (or rather drinking) a formula that can also be used for tube feeds. Besides a little puréed fruit that was his diet. He has lots of stomach and intestine issues so this is layers deep. My tiny 7 year old weighs 35 pounds. You can see his spine. I can feel his pelvis bones when I carry him. We are slowly trying to add foods but he doesn’t like eating. Trying to make 1500 calories into purée or shake texture is fun. Mct oil will be my new friend. The formula isn’t covered by insurance because he isn’t tube fed and I can’t afford to buy that much of it. It also doesn’t really have enough fat and protein to help him grow. Long story short. Hi. Nice to join you (not really).

    • bakersdozenandapolloxiv

      I still have traumatic memories of MTC oil…we had to give it to Apollo when he had chylothorax and it smelled awful! Best of luck with your little guy!

    • When we needed to increase calories for my tube-fed son the dietician had us start adding unsweetened, full-fat, canned coconut milk to his food. The calories add up quickly and the milk would taste good in a smoothie, I would think. I have no idea if this will help you out, but wanted to mention it just in case.

  11. No need for “copy” taco bell. Apollo needs calories, he needs to eat…and he’s doing it.

    It’s the eating and enjoying that is most important. And, perhaps, this will lead to more adventures in eating.

    Go Apollo! Go Taco Bell!!

  12. We had similar issues getting my youngest brother to eat after some medical issues. He was dangerously underweight and wouldn’t eat anything anyone offered. One of the few things he would finish were Wendy’s frosties- and only Wendy’s frosties, not any other kind of milkshake. My mother would have us pick them up and drive them to him at the hospital a few times a day! The people at the local Wendy’s knew us very well for many months. Our situation was much shorter than yours, I can only imagine what a years long battle feels like. Enjoy your victory! There is nothing like a empty plate for a (very, very) reluctant eater.

  13. I feel every. single. word. of this. Every one. When Sammi was between 18 months and 2, we used to cut M&Ms in half for her to suck on. I gave her bowl after bowl of blueberries in cream, only to sigh as she shook the cream off of each berry into the bowl before she’d eat them. Taco Bell? GO FOR IT. Every day if he wants, no judgement from these mamas who get it. Hang in there — you are doing so beautifully for him and all the rest of your lucky kids.

  14. Yay Apollo – eat those tacos! Taco Bell for the win!

    I wonder how he would feel about a wrap? You could do all sorts of great things with wraps.

    Praying you have success after success Renee.

    Thanks for sharing and for linking up to the #SHINEbloghop.

    Wishing you a lovely weekend.
    xoxo

  15. YAY! The power of Taco Bell! It is so awesome that he will eat them happily and so well!

    Thank you for sharing this on the #SHINEBlogHop!

  16. […] has been fascinated by it, much like he was fascinated with the building of Taco Bell earlier this year. He has been asking and asking to go to the corner store for a long […]

  17. […] The boy loves TACOS. […]

Please share your thoughts!