Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 glad to hear about your trip to disney...we went 1 1/2 yrs. ago and had the best vacation....we are now planning a trip back this spring. anyway, my 4 yr. old daughter, anna grace, also has been dx with leighs. she has a gtube and it was the best thing we could have ever done for her. we feed her approx. 4 times a day...bolus, so it only takes a few minutes. then at night, she is hooked up to a feeding machine, usually for a few hours....we turn it off and unhook before we (my husband and I) go to bed. please feel free to email me with any specific questions. bethany mom to brennan 6, palmer & anna grace (leighs) 4 > We are home after a great trip to Disney. We enjoyed the new year's eve at > Epcot. The fireworks were incredible. My daughter saw her loved caracter who is > Pooh Bear. > > I would like to thanks everybody who sent info before our travel. All info > were very useful. The best thing was the fastpass use without a fastpass. > > Seaworld is the only park that is not well prepared to receive disability > people. > > Returning to real life, I need some info about G-Tube. Our Brazilian doctor > is saying that we reached the time that our 11 year-old-daughter diagnosed with > Leigh Disease need to have a G-Tube installed. We do not have any experience > with this. We are afraid about her life with this type of feeding. We really > need info about the use and life with a G-Tube. > > > Thanks! > > Edson Quote Link to comment Share on other sites More sharing options...
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