Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Edson, I'm glad to hear you all enjoyed Disney. 's favorite character had always been Mickey but the last time we were at Disney World I think she changed her mind.I believe it is now Duck.When she saw him,he acted like he was leaving with her,his handler even had to come get him. was thrilled,of course. has a g-tube,she is still able to eat whatever she wants.The good thing about the tube is when she is sick or refusing to eat I know she is still getting everything she needs.We did her tube mostly for hydration and the fact that her doc seems to think that her ability to swallow will get to be a problem.It also was getting where she had to have IV's about every month for hydration and her veins were not the best to begin with.Rather than just do a port that could only be used for fluids or IV med it was decided the tube would be best.This way she gets plenty of fluids and we can use it to give her meds. We also had a port done at the same time..The port was just-in-case. I am glad we went this way, now I don't have to worry about whether or not is getting enough liquid,I doubt that she drinks even 2 ozs a day, and now I don't have to fight with her about it.She is 21 yrs old and drinking has always been a problem.Also her meds are a lot easier to do with the tube. Good luck with what ever you decide. , Mom to ,Mom to Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Edson, I'm glad to hear you all enjoyed Disney. 's favorite character had always been Mickey but the last time we were at Disney World I think she changed her mind.I believe it is now Duck.When she saw him,he acted like he was leaving with her,his handler even had to come get him. was thrilled,of course. has a g-tube,she is still able to eat whatever she wants.The good thing about the tube is when she is sick or refusing to eat I know she is still getting everything she needs.We did her tube mostly for hydration and the fact that her doc seems to think that her ability to swallow will get to be a problem.It also was getting where she had to have IV's about every month for hydration and her veins were not the best to begin with.Rather than just do a port that could only be used for fluids or IV med it was decided the tube would be best.This way she gets plenty of fluids and we can use it to give her meds. We also had a port done at the same time..The port was just-in-case. I am glad we went this way, now I don't have to worry about whether or not is getting enough liquid,I doubt that she drinks even 2 ozs a day, and now I don't have to fight with her about it.She is 21 yrs old and drinking has always been a problem.Also her meds are a lot easier to do with the tube. Good luck with what ever you decide. , Mom to ,Mom to Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Edson, I'm glad to hear you all enjoyed Disney. 's favorite character had always been Mickey but the last time we were at Disney World I think she changed her mind.I believe it is now Duck.When she saw him,he acted like he was leaving with her,his handler even had to come get him. was thrilled,of course. has a g-tube,she is still able to eat whatever she wants.The good thing about the tube is when she is sick or refusing to eat I know she is still getting everything she needs.We did her tube mostly for hydration and the fact that her doc seems to think that her ability to swallow will get to be a problem.It also was getting where she had to have IV's about every month for hydration and her veins were not the best to begin with.Rather than just do a port that could only be used for fluids or IV med it was decided the tube would be best.This way she gets plenty of fluids and we can use it to give her meds. We also had a port done at the same time..The port was just-in-case. I am glad we went this way, now I don't have to worry about whether or not is getting enough liquid,I doubt that she drinks even 2 ozs a day, and now I don't have to fight with her about it.She is 21 yrs old and drinking has always been a problem.Also her meds are a lot easier to do with the tube. Good luck with what ever you decide. , Mom to ,Mom to Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, I'm so glad your family had a good time at Disney World! -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, I'm so glad your family had a good time at Disney World! -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, I'm so glad your family had a good time at Disney World! -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, So glad to hear you and yours had a wonderful time at Disney! Your right....the fastpass without the pass is GREAT! It took us a bit of time to get back to normal after our magical trip to Disney.....So get some rest and be blessed! Horsley Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, So glad to hear you and yours had a wonderful time at Disney! Your right....the fastpass without the pass is GREAT! It took us a bit of time to get back to normal after our magical trip to Disney.....So get some rest and be blessed! Horsley Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Edson, So glad to hear you and yours had a wonderful time at Disney! Your right....the fastpass without the pass is GREAT! It took us a bit of time to get back to normal after our magical trip to Disney.....So get some rest and be blessed! Horsley Travel to Disney 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 Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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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