Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Hello to all IT has been a very long time since I have posted on this listserve and much has happened. As some of you may remember I have a daughter named Sage ans we are from Bermuda. sage was born SGA at 5lbs9oz and 18in and had extreme feeding difficulties since birth, was failure to thrive and suffered extreme hyploglecemia. and reflux. A G-tube was put in at 14 months, and complete metabolic and genetic workups including cystic fibrosis and kidney testing. Everything the doctors could have tested Sage for she was tested for. We have no answers, everything comes back normal. She is developing normally however is speech delayed which they are relating that due to the fact that she has not eaten orally since 12 months old. She is not RSS however faces alot of the same things. I still follow the listserve since so many of the issues are the same. WE are taking Sage and her older sister to Disney World this Christmas. I was wondering if anyone knows if she would be able to get some sort of pass stating that she is tube fed. I am worried about waiting in all the lines when she is bolus feed every two hours. This is our first big trip with the G TUbe and Im a little concerned. Our travel agent said that only people with Wheel chairs get special privledges. If anyone has experienced this I would greatly appreciate the advice. Thanks! Gretchen Canning Mom to Chloe 5yrs and Sage 2 1/2 yrs, SGA, G TUBE, 26 lbs and 35in. Need a new email address that people can remember Check out the new EudoraMail at http://www.eudoramail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Gretchen, When Max was Sage's age, he was on continuous feeds and in a stroller when we went to Disney. I took a brochure about RSS with me and a doctor's note stating that he was a medically fragile child and would need special accommodations to keep him out of the heat and sun for long periods of time. When we got to DisneyWorld, we went to Guest Services, or whatever it was called, handed over the documents, and received our pass so we did not have to wait in those long lines. Maybe you can try the same thing. I'm sure Sage will need that stroller! At age 2, what is the difference between that and a wheelchair anyway? At least for our kids. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 I'm not sure about pass status, but we have done bolus feeds in lines before - you may get stares, but it's a trade-ff between that and having to re-arange schedules all the time sometimes... Also, we have an Enteralyte pump which is in a backpack which we use for slower bolus feeds these days, and it's not so conspicuous once it's loaded up. It is also great for feeding him bigger bolusses - Like when I'm in a hurry before school, I sometimes feed him a can bolus then put a half can in the pump to use in the car, so I don't have to add oil when the oil seems to be harder to digest... Inga At 04:42 PM 11/12/2003 -0500, you wrote: > >Hello to all > >IT has been a very long time since I have posted on this listserve and much >has happened. As some of you may remember I have a daughter named Sage ans >we are from Bermuda. sage was born SGA at 5lbs9oz and 18in and had extreme >feeding difficulties since birth, was failure to thrive and suffered extreme >hyploglecemia. and reflux. A G-tube was put in at 14 months, and complete >metabolic and genetic workups including cystic fibrosis and kidney testing. >Everything the doctors could have tested Sage for she was tested for. We >have no answers, everything comes back normal. She is developing normally >however is speech delayed which they are relating that due to the fact that >she has not eaten orally since 12 months old. She is not RSS however faces >alot of the same things. I still follow the listserve since so many of the >issues are the same. > >WE are taking Sage and her older sister to Disney World this Christmas. I >was wondering if anyone knows if she would be able to get some sort of pass >stating that she is tube fed. I am worried about waiting in all the lines >when she is bolus feed every two hours. This is our first big trip with the >G TUbe and Im a little concerned. Our travel agent said that only people >with Wheel chairs get special privledges. If anyone has experienced this I >would greatly appreciate the advice. > >Thanks! > >Gretchen Canning >Mom to Chloe 5yrs and Sage 2 1/2 yrs, SGA, G TUBE, 26 lbs and 35in. > > > >Need a new email address that people can remember >Check out the new EudoraMail at >http://www.eudoramail.com > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Thank-you Jodi and Kim for your information. I have a medical emergency letter from her endo at Boston Childrens Hospital, and will present that at entrance. Hopefully that will work! Just knowing that I can store her medications and formula makes me feel better!! Gretchen -- --------- Original Message --------- DATE: Thu, 13 Nov 2003 04:05:07 To: RSS-Support Cc: Gretchen, When Max was Sage's age, he was on continuous feeds and in a stroller when we went to Disney. I took a brochure about RSS with me and a doctor's note stating that he was a medically fragile child and would need special accommodations to keep him out of the heat and sun for long periods of time. When we got to DisneyWorld, we went to Guest Services, or whatever it was called, handed over the documents, and received our pass so we did not have to wait in those long lines. Maybe you can try the same thing. I'm sure Sage will need that stroller! At age 2, what is the difference between that and a wheelchair anyway? At least for our kids. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Thank-you for your information! I appreciate your help. Gretchen -- --------- Original Message --------- DATE: Wed, 12 Nov 2003 20:24:31 To: RSS-Support Cc: I'm not sure about pass status, but we have done bolus feeds in lines before - you may get stares, but it's a trade-ff between that and having to re-arange schedules all the time sometimes... Also, we have an Enteralyte pump which is in a backpack which we use for slower bolus feeds these days, and it's not so conspicuous once it's loaded up. It is also great for feeding him bigger bolusses - Like when I'm in a hurry before school, I sometimes feed him a can bolus then put a half can in the pump to use in the car, so I don't have to add oil when the oil seems to be harder to digest... Inga At 04:42 PM 11/12/2003 -0500, you wrote: > >Hello to all > >IT has been a very long time since I have posted on this listserve and much >has happened. As some of you may remember I have a daughter named Sage ans >we are from Bermuda. sage was born SGA at 5lbs9oz and 18in and had extreme >feeding difficulties since birth, was failure to thrive and suffered extreme >hyploglecemia. and reflux. A G-tube was put in at 14 months, and complete >metabolic and genetic workups including cystic fibrosis and kidney testing. >Everything the doctors could have tested Sage for she was tested for. We >have no answers, everything comes back normal. She is developing normally >however is speech delayed which they are relating that due to the fact that >she has not eaten orally since 12 months old. She is not RSS however faces >alot of the same things. I still follow the listserve since so many of the >issues are the same. > >WE are taking Sage and her older sister to Disney World this Christmas. I >was wondering if anyone knows if she would be able to get some sort of pass >stating that she is tube fed. I am worried about waiting in all the lines >when she is bolus feed every two hours. This is our first big trip with the >G TUbe and Im a little concerned. Our travel agent said that only people >with Wheel chairs get special privledges. If anyone has experienced this I >would greatly appreciate the advice. > >Thanks! > >Gretchen Canning >Mom to Chloe 5yrs and Sage 2 1/2 yrs, SGA, G TUBE, 26 lbs and 35in. > > > >Need a new email address that people can remember >Check out the new EudoraMail at >http://www.eudoramail.com > > > > > Quote Link to comment Share on other sites More sharing options...
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