G tube, shunt, vision impaired baby

[999miles]

hi, I'm a long lurker, first time poster. We travel to Disney world every year but this is the first time with our new daughter. She will be one.

Our dd was born at 24 weeks and has shunted hydrocephalus, a g tube, and was recently diagnosed with cvi, giving her some level of visual impairment. She has been cleared by her doctors to travel but I was wondering if anyone had experience with g tube feedings or tips on how to help her explore Disney.

We plan on using her stroller as a wheelchair because she is delayed.

 

[Betty Rohrer]

hi, I'm a long lurker, first time poster. We travel to Disney world every year but this is the first time with our new daughter. She will be one.

Our dd was born at 24 weeks and has shunted hydrocephalus, a g tube, and was recently diagnosed with cvi, giving her some level of visual impairment. She has been cleared by her doctors to travel but I was wondering if anyone had experience with g tube feedings or tips on how to help her explore Disney.

We plan on using her stroller as a wheelchair because she is delayed.

make sure you stop at GS and get the stroller as wheelchair tag so you can use as wheelchair. not sure what you need to do for feedings but if you need first aid center in each park will have an area you can use if needed.

 

[Mousequake]

My daughter has a G-tube, and we found first aid very helpful except for one thing: they were very happy to store any supplies we needed for her tube feeding so we didn't have to carry them around with us, but they won't store food, which means they won't store any special formula you may have for tube feeding. Since for us, that's by far the heaviest part (we can get away without using a pump, fortunately) we found it pretty annoying. But they're always super helpful with letting us use an empty exam room for feeding as long as I explained to them what we needed.

 

[DisneyOma]

My daughter has a G-tube, and we found first aid very helpful except for one thing: they were very happy to store any supplies we needed for her tube feeding so we didn't have to carry them around with us, but they won't store food, which means they won't store any special formula you may have for tube feeding. Since for us, that's by far the heaviest part (we can get away without using a pump, fortunately) we found it pretty annoying. But they're always super helpful with letting us use an empty exam room for feeding as long as I explained to them what we needed.

Could you rent a locker to store the formula?

 

[999miles]

My daughter has a G-tube, and we found first aid very helpful except for one thing: they were very happy to store any supplies we needed for her tube feeding so we didn't have to carry them around with us, but they won't store food, which means they won't store any special formula you may have for tube feeding. Since for us, that's by far the heaviest part (we can get away without using a pump, fortunately) we found it pretty annoying. But they're always super helpful with letting us use an empty exam room for feeding as long as I explained to them what we needed.

Thank you. We do bolus feeds as well. Would they let you stay for a little bit? Our daughter has to stay reclined for 30 minutes after she eats or it all comes back up.

 

[gap2368]

yes you can stay at first aid for as long as you need

MK has about 8 or so rooms with curtains around then just a coat and a chair and there are 2 bigger treatment rooms that you can use for feeding these have a coat counter sink

HS only has 3 rooms ( and every time I have been there I am the only one. with 2 treatment rooms

I have only been at EPCOT 1 to lie down so not sure how may rooms but I think it also has 2 treatment rooms

AK I have never been to this first aid yet

I hope this helps and yes the first aid at disney is great

 

[ButterflyEffect]

My dd is on continuous g-tube feedings with a pump. She also has severe CVI and has a legally blind diagnosis. We found that she was very overwhelmed with the stimulation at the parks. I think her vision was certainly affected at times. When things around us were more calm I believe her vision was better. The small world ride was a good for us, nice slow moving boat and more gentle sounds. Nothing jumping out on us. She found Winnie the Pooh a bit much at times as there are suddenly things "jumping" out at you to surprise you. I think Peter Pan would have been good for her but it isn't accessible. We did enjoy the meet and greets and the shows. Although the shows have a lot going on she seemed to enjoy the live action.
For the feedings, like pp said, first aid is the best place. We got her feeds ready, cleaned everything, gave meds and it was great for diaper changes. (My girl is 10 so the large tables are needed.). If your dd needs to be still for half an hour have you considered more continuous feeds or pump feeds to slow it down more? It may help when travelling. My dd used to have very severe reflux even when on very slow continuous feeds but grew out of it at about four years old.

 

[ButterflyEffect]

Few more things I thought of

We avoided leaving anything at First aid because I was too worried we would forget to pick it up at the end of the day (especially meds)!

Fantasmic was way too much for my girl, won't be back. For a one year old it may be ok as they may not pay attention.

We loved Jungle cruise, the microphone wasn't too loud. Safari was great too. On most trains the microphone is way too loud and it scares the pants off her, we haven't been on the Disney trains yet though. Sudden loud noises are really tough for my girl and I think it has to do with the way she processes things with her CVI.

 

[Nevada Jen]

You might just feed in her stroller reclined so you can spend the half hour walking to the next ride. Be prepared to be surprised by what she likes and doesn't like. My DD with visual impairment loves the rougher rides and about dies of boredom on slow dark rides. My DD really went on everything without a height requirement at that age and was all smiles. Just make sure you get the stroller as wheelchair tag. Even if they try to convince you you don't need it because you can just pick her up and carry her in line. You need it because you will need to keep your stroller with you because it will have feeding supplies in it. You will probably be shocked at how easy the trip is. The reality is that you are used to carring for her 24/7 so to be able to do something else while caring for her at the same time is a really nice break!

 

[999miles]

Thank you moms! I appreciate the advice from someone who has been there done that. We joke that her motto is "I wanna be where the people are." I'm bringing ear protection for her as well. We already bring one for our older, neuro typical daughter who just hates fireworks.

We'll check out first aid and get the stroller as a wheel chair tag. If I can handle a room full of nicu doctors, I can be kind but firm with a cast member.

 

[gap2368]

about being worried about leaving something at first aid I have done this at lest 1 time and all my things where still there the next day with the nurse saying oh would you like your things or do you want us to hold on to it another day. I di leave it there that day too. but you are given a pice of paper with your name the date you are laving your hotel and phone number so if you did leave something they have your information and can call you. I would all ways bring extra of what ever just in case and never have all of anything in one place so if you did leave things then you would have more at the hotel

 

[Mousequake]

Thank you moms! I appreciate the advice from someone who has been there done that.

...and dads.

Signed,

David ;-)

 

[999miles]

Sorry dads! Your help is appreciated as well.