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Old 06-02-2012, 05:16 PM   #46
budwmn
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For the OP or anyone else who may stumble upon this thread, below is a link to the Kennedy Krieger feeding program at Hopkins. It literally saved my son's life because without proper nutrition and eating habits, it is impossible to live a normal life.

I'm NOT trying to sound preachy, but if I can even help one family it's worth it. Also, almost everyone there was from out of town. Insurance covered everything for my son. It was a hard few weeks, but it's probably the best thing I've done as a parent.

http://www.kennedykrieger.org/patien...ders-continuum
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Old 06-03-2012, 01:30 AM   #47
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best wishes finding a solution

Quote:
Originally Posted by Mommy2Abby View Post
I assume this has been asked before but I couldn't find anything when I did a search.

We are getting ready for our 5 night Disney Dream cruise and I am wondering if there is any way to gain access to a microwave while onboard the ship? My youngest DD has an oral sensory processing disorder and only eats a very few number of foods. About the only thing I can count on her to eat consistently is Kraft macaroni & cheese. It CANNOT be any other kind (I've tried...trust me!)
Thanks!
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Originally Posted by JennLK View Post
Will your child eat kraft easy mac? I bet you can get them to bring you some super hot water to make the easy mac. Test it at home first but I am willing to bet if the water in the carafe is hot enough - you may be able to cook the pasta without a microwave - it may just have to steep in the carafe for 10 minutes or so.
I like the idea of trying to make Easy Mac at home and see if she eats it. Not the stuff in the microwave bowls, but the kind that comes with a single serve pouch of pasta & pouch of cheese powder. Seems to be the same as the regular traditional Kraft mac & cheese just a single serving. And then go with having room service send up a carafe of super hot water. Bring a couple of bowls & a tiny bottle of dish washing liquid.
Not ideal, but you'll know she'll have something to eat.

And if you you find something different about access to a microwave, please share. I'd love to know.


Quote:
Originally Posted by budwmn View Post
For the OP or anyone else who may stumble upon this thread, below is a link to the Kennedy Krieger feeding program at Hopkins. It literally saved my son's life because without proper nutrition and eating habits, it is impossible to live a normal life.

http://www.kennedykrieger.org/patien...ders-continuum
This immediately made me think of some of my online friends with children with eating/sensory issues - many of whom rely on a g-tube and/or have had bad experiences with feeding programs locally. I've shared your story and link with them. Thank you.
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Old 06-04-2012, 08:59 AM   #48
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OP here

I have not been online all weekend and opened up this thread this morning to so many wonderful responses! I was kind of afraid that I would get flamed for being a bad parent for not "making" my kid try different foods.

It is SO refreshing to read all of your responses and know that I am not the only one dealing with these issues! My DD will be 3 this week and we have been dealing with her oral sensory issues since birth!

She has reflux, in addition to her sensory issues and has had trouble tolerating most foods all her life. Her story is similar to all the ones I have seen posted here, her nervous system is simply not able to process the textures (or temperatures) of lots of foods. We have been doing feeding therapy and OT for the last year and a half, and while it has helped, we are obviously still struggling!

We are lucky in that she will tolerate the taste/texture of Pediasure, so we supplement a lot with that. For my DD, it doesn't really matter HOW hungry she is, if it is a food she can't/won't eat, then it's not going to happen.

I so appreciate everyone's help in letting me know what is available to eat on the cruise. The pictures were great! It looks like she will eat the cheese cubes, but the mac & cheese will likely be a no-go. I have never seen those pouches of Kraft mac & cheese before but I will definitely be hunting them down before we leave to see if she will eat it.

I know she won't starve. Like I said, she will eat cheerios and kix and goldfish and a few other things I intend to bring with me, but it would be nice for her to have an actual "meal" maybe once while we're gone

I have also contacted DCL directly to see if they can help me out at all, but I have not received a response yet. I will definitely report back when I do.

Since everyone has been so nice, I will ask one more question. DD will only drink milk if it is warm (at least room temperature). I sort of assumed that I could ask for warm milk at meals on the ship and they would be able to do that for me. Is that true, or should I be planning for a way to warm it up on my own?

Thank you all so much! This has been a wonderful start to my day!
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Old 06-04-2012, 09:34 AM   #49
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foods

Don"t know what kind of milk your child drinks but they only have on the dream whole milk and skim milk.
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Old 06-04-2012, 09:55 AM   #50
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Don"t know what kind of milk your child drinks but they only have on the dream whole milk and skim milk.
Seriously?

Well...we generally mix the Pediasure with her milk, so hopefully that will mask the change. I know she won't drink skim milk by itself. She used to drink whole milk...maybe it will still be "acceptable".

DCL is killing me here
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Old 06-04-2012, 02:43 PM   #51
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Quote:
Originally Posted by Mommy2Abby View Post
OP here

Since everyone has been so nice, I will ask one more question. DD will only drink milk if it is warm (at least room temperature). I sort of assumed that I could ask for warm milk at meals on the ship and they would be able to do that for me. Is that true, or should I be planning for a way to warm it up on my own?

Thank you all so much! This has been a wonderful start to my day!
My ds4 will only drink warm milk, i brought a baby bottle which i filled with milk, ran the sink to the hottest water, filled the sink and sat the bottle in it for 10-15 minutes 'til it was warm enough for him... a water bottle would work as well, but the baby bottle is easier to wash.

If your daughter will only drink 2%, i suggest mixing the whole and the skim to get the right texture for her
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Old 06-04-2012, 02:54 PM   #52
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I've heard they have bottle warmers you can borrow.

Cabanas has chocolate, 1%, skim and whole milk.

photo by Timon
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Old 06-04-2012, 03:05 PM   #53
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Cabanas has chocolate, 1%, skim and whole milk.
YAY! Looks like a lot of our meals will be at Cabanas!
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Old 06-04-2012, 04:10 PM   #54
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You can also take whatever you want/need back to our room... Or order room service.
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Old 06-04-2012, 04:24 PM   #55
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Quote:
Originally Posted by Zandy595 View Post
I've heard they have bottle warmers you can borrow.

Cabanas has chocolate, 1%, skim and whole milk.

photo by Timon
Now I want a tall glass of chocolate milk
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Old 06-04-2012, 06:00 PM   #56
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Quote:
Originally Posted by Mommy2Abby View Post
YAY! Looks like a lot of our meals will be at Cabanas!
They have the same milk selection in the dining rooms. Just let them know which type you prefer to have.
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Old 06-04-2012, 07:03 PM   #57
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I have learned quite a bit from reading these posts. My 10yr old DS was a very, very picky eat but his pediatrician always made light of it and I had never heard of this disorder. He adds more items each year but he is still picky. As a baby he would stick his tounge out just a tad and taste. Very few things would make him stick it out further to actually eat some of the food. He loved yogurt, Mac n cheese and as he got older he added pizza and chicken nuggets to his list. I endured comments ans stares from my MIL who insisted he was just spoiled and indulged. Both my son and daughter were born in the 34th week but she never had any issues with food. I also never made the connection between me not liking certain textures and his food issues. I have never been able to get cottage cheese to my lips and I like the taste of oatmeal but I must have lots of fruit in it to avoid feeling it in my mouth.

I feel all the pregnancy book and articles could have been skipped if I just known about this site. LOL

My option is to ask in advance for pasta w/butter (slightly wet) and some hot water during dinner and mix the package into the pasta and butter
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Old 06-04-2012, 07:21 PM   #58
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I have never heard of oral sensory issues and I am stunned! It's so sad when a child has a medical issue and people don't seem to understand it. I hope you guys can find something that works and enjoy your trip!
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Old 06-04-2012, 09:32 PM   #59
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I don't have any answers as we haven't cruised yet, but I feel your pain! My little boy is six and, in addition to his life threatening nut allergies, he has GERD/reflux and swallowing issues...and major food aversions.

We discovered during his reflux treatment that (in laymans terms) his tongue doesn't work correctly, so when he swallows food, he was aspirating significant quantities of it. Additionally, when he ate food with mixed textures (like really soft pears--something that has a bit of a solid plus a liquid), his mouth couldn't process it, so he would just swallow it whole and often large chunks would go into his lungs. Plus he was refluxing high enough that he also was aspirating stomach acid into his lungs. Such a mess.

I spent a long time thickening all his liquids with Thick-It (yuck) and he went through feeding therapy. He still flat-out refuses many foods including most meat (he'll eat soft hamburgers and the Mickey nuggets from Costco--that is it. No other meat.) He still can't figure out mixed texture foods and "yogurt with chunks in it" (as he calls it) is cause for tears because it sends him into complete overload. His mouth and his brain just flip out and he doesn't know what to do with the different textures in his mouth. He drinks only milk and water--won't even look at juice and there are many popsicles he refuses because they melt down into too thin a liquid in his mouth.

Anyhow, that is a small portion of our story. Sometimes it helps to know you're not the only one out there. Most of the time you'd never know my 6 year old has these issues--people focus on his nut allergy while I work behind the scenes on the nut allergy *plus* the other medical issues.
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Old 06-04-2012, 09:34 PM   #60
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My option is to ask in advance for pasta w/butter (slightly wet) and some hot water during dinner and mix the package into the pasta and butter
This is a great idea...maybe worth a shot at home with some other brand of shaped noodles. You could buy the Annies brand of mac and cheese and just cook up the pasta (they have it in bunny shapes or Arthur shapes plus boring shapes) and then use the Kraft packets. That way you could try the idea out at home before your cruise and remind your kiddo that there will be Mickey noodles on the big boat and you're practicing for Mickey.
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