MommaMalia Blog: Tales of The Feeding Tube

Posts Tagged ‘Disney World

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Meeting Tinkerbelle

Malia at the Bibbidi Bobbidi Boutique

Chef Mickey Character Breakfast

Malia and I at the Boutique

Meeting the big cheese himself...Mickey Mouse


The land of Mickey Mouse. The home of Cinderella. Where fantasy meets the world and innovation is on every main street. This is the place where all your dreams come true! If only Mickey Mouse wasn’t just a sorcerer’s apprentice and he could actually make my one and only dream come true…that my child would actually want to eat FOOD! But…alas…Mickey Mouse was far too enchanting and exciting for my little one and sadly instead of granting my dream he actually contributed to her regression. As magical as Disney World was it unfortunately FastPassed us right back on the Feeding Tube. *Sigh*

So your saying, “Feeding Tube? I thought when you wrote last you said that she was taken off the feeding tube!?!?! What happened?”

Well, let me catch you up. Malia recently graduated CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP) FEEDING PROGRAM where she was re-taught the basics of eating in a fun and playful setting for one month. The intensive treatment was a god send and upon graduation Malia’s bad eating behaviors were disappearing. With her new form of structured meal times Malia’s appetite was up and she was beginning to eat like any normal child would. She didn’t pocket her food anymore and the stress from feeding time was only a distant memory. Last I wrote Malia was taken off the feeding tube temporarily and we were told to enjoy our vacation in Florida, tube free.



Prior to our vacation this is the advice I got from the feeding team at CHOP for our Disney vacation:

1. Feeding sessions should continue to happen at least once a day while on vacation.

2. Feed her at least 10 bites out of her usual 25 bites during feeding sessions in Disney World.

3. Make sure the bites are HIGHLY preferred foods. ( I packed and brought with us applesauce and goldfish to use for her bites. I also packed her Boost drinks. But, I accidentally forgot to pack her Benecalorie…of course…so we had to go without that for the week.)

Hanging out in EPCOT/ITALY waiting for Illuminations to start

FAST FORWARD to Our Disney Vacation:

So I knew that I was going to have to give Malia these structured meals in Disney. No problem right? Wake up early…feed her…enjoy our day. Simple enough. Wow! Easier said then done when you have to wake up at 6 am to shower, eat breakfast, get ready and then catch a bus ride to a park before it opens. I probably skipped a few days of bites because there was just little to no time to do them. I have not been to Disney World since I was 12 years old. I am 29 now. That is a long time. Just as I was excited and wide eyed back then…I was even more excited now. So, of course, I wanted to do EVERYTHING and I wanted her to do EVERYTHING! Wouldn’t you? If any of you have been to Disney you know that you can try to do it all but you will end up running yourself into the ground to do it. Well, that is what I did. We saw every character. We stood in 45 min lines to see princesses. We went to every park and rode every ride we could. You get the point. So anyways, I found it very hard to fit in our scheduled sit-down meals. We were rarely at the hotel. I know what your thinking…you should have MADE the time. And I tried…really I did. But I am not going to leave a park where all my family is just to ride a 25 min bus back to the hotel to do a 15 min. meal time just to turn around and ride another 25 min. bus back to the park. No, I am going to just get us something to eat in the park so we can do more things. So I found that I was eventually doing structured meals late at night after we got back to the hotel when we were both tired and wanting to go bed. Not an ideal situation.

These are some of the issues with trying to accomplish structured meals on vacation:

1. Little to no time to do them

2. Finding the foods that she needed for her bites. (She can only have certain foods she was introduced to in the hospital)

3. EVERY yogurt was basically low fat and/or Fat-Free. What about the people who need fattening yogurt?!?! Seriously? Don’t get me started on my issues with the world going virtually fat free. Not everyone is obese. Some people need fat!! (Sorry, had to vent)

We had to take a picture with this Princess...after all...we have the same name!

Anyways, structured meals were not easy to do on vacation. Ok. No problem. She has been eating SO WELL she is sure to make up the calories at normal eating times….right? Wrong! Malia regressed back to every bad behavior and eating problem that she has ever had. She was completely distracted in the dinning hall. She would not sit still long enough for her to eat a lot of food and on top of it all she began”Pocketing” her all over again! Eating times in Disney became VERY VERY stressful. I seriously had horrible flashbacks to how life was prior to CHOP feeding program. By Wednesday I was in tears at lunch time. I could not get her to eat. I felt like EVERY child in the dinning hall was eating except for my child. I felt like I was the ONLY parent yelling at their child to sit down and focus on eating. I had tried everything to get her to eat.  I showed her pictures on my cell phone of her with the feeding tube and telling her if she didn’t eat she was going to get it put back in. I threatened that we were not going to any more parks for the rest of the day or that she could not go swimming. I even threatened too leave Disney on the next flight out if she didn’t eat. Threats only got her to eat two more bites. I have to be honest. Eating in Disney was a nightmare I would love to forget.

For those going on vacation with FTT children I would advise you to be very aware that you might encounter problems. I didn’t realize how distracted she would be on vacation. The last thing she wanted to do was eat. I don’t blame her. What would you rather do?

In conclusion, the ramifications of Disney were pretty bad. Our 1st follow up appointment with CHOP did not go so well. From the time she left feeding school till right after Disney Malia lost almost 2 lbs. She weighs only 26 lbs now. So after much begging and pleading  for them not to put her back on the feeding tube…they did. Malia is now back on 175 ML of Nutren Jr. for at least 2 weeks to a month. We will check her weight in a little bit and if she has gained a good amount of weight we will start to take her off the tube again.

So…unfortunately…I guess the name of my blog will not be changing anytime soon. It will still be…TALES OF THE FEEDING TUBE.

Disney World

In the end…aside from Malia not eating well, we did have a great time and loved being in Disney World. It was a blast and I would totally do it again…in fact I am already planning our return. Shhh! Just don’t tell my husband…LOL.


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