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Re: Myotubular Myopathy & Flight

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  • tranix79
    hiya i am new to this group my son rhys is 9 yrs old and has mtm and we have just come home from a holiday in egypt although it was my wedding too as my
    Message 1 of 11 , Jun 7, 2007
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      hiya i am new to this group my son rhys is 9 yrs old and has mtm and we
      have just come home from a holiday in egypt although it was my wedding
      too as my husband lives out there and i know all about the hassles with
      flying
      Rhys is on a bipap machine overnight although this doesnt require
      oxygen but he had flight assesment tests done to check his oxygen
      levels to which i was told he needed 2ltrs of oxygen per minute due to
      his weak lungs
      i will warn you this needs to be arranged as soon as you can and you
      eill need doctors reports and phone calls to and from the airline and
      most airlines charge for this.The charge varies from one company to
      another so you will have to ask but i was lucky cos when i got to the
      airport in manchester i wasnt charged so i was ok
      the staff on the KLM airline were very good with us and helpful always
      checking if he was ok couldnt have asked for better service good luck
      if you require anymore please dont hesitate to ask
    • Scott & Betsy Grant
      We have flown a couple of times with Kyle (age 10 now). Once when he was 7 and once last winter. When you book your travel (or when Make-A-Wish books it),
      Message 2 of 11 , Jun 7, 2007
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        We have flown a couple of times with Kyle (age 10 now).  Once when he was 7 and once last winter.  When you book your travel (or when  Make-A-Wish books it), be sure to request flights with plenty of connection time.  The last time we traveled, we had to go through gates that didn't have a "Jet-way" that attached to the plane.  As a result, we had to wait until everyone else had gotten off the plane, and they could wheel a lift to the door.  We then had to walk a very long distance to enter the terminal via a door with an elevator, then walk still further to our connecting flight.  On the return flight, we were faced with the same situation, but this time, it was to board the plane.  This time, I picked Kyle up and climbed up the steep stairs to get into the plane.
         
        We have found that it's easier to sit up front for us, but Kyle can go without nebs and other care for longer periods of time.  I know this might all sound kind of scarey, but really the hardest part was deciding what to carry on and what to pack. 
         
        Another thing to point out:  Each time we've traveled, the TSA really checked out our LTV950 and the portable suction very closely.  One time, the TSA agent asked me to open up the LTV, which I asked him "How?"  They aren't trained on a lot of the specialized medical equipement, and didn't really know what to make of it.  When I at least turned it on, they all jumped when it did it's initial "BEEP"...  The joys of travel!
         
        ALL OF THIS ASSIDE, Make-A-Wish does a wonderful job, and you will have a great time!
         
        -Scott

         
        On 6/7/07, masonsparents <masonsparents@...> wrote:

        Have any of you heard of any issues or problems MTM kids have with
        flying on a commercial airliner? Besides the issues related to getting
        the medical equipment on the plane - are there any physical
        problems/risks for these kids? Have you ever flown with your MTM kid?
        Make-A-Wish is arranging for us to take Mason to Disney World in
        Florida, we would have to fly from California.

        Hope you all are well. Mason turns 6 on Tuesday June 12.

        -Scott


      • Wendy
        Yes, that s a good point. Sometimes you need to phone the airline in advance to let them know what medical equip you are carrying on board - United Airlines
        Message 3 of 11 , Jun 7, 2007
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          (Message over 64 KB, truncated)

        • Scott & Betsy Grant
          I just have to throw in that our stay in the little village where Make-A-Wish puts you up is AMAZING. It is well-kept, roses growing outside your villa, 2
          Message 4 of 11 , Jun 7, 2007
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            I just have to throw in that our stay in the little "village" where Make-A-Wish puts you up is AMAZING. It is well-kept, roses growing outside your villa, 2 in-ground pools, a wonderful little fun area to play when you are not at a park, where there are remote-control boats on a pond, a big toy train, arcade games, etc. Everything is geared for little kids...the talking tree, the dining hall has little chairs and tables with dolls lining the walls, and it's all VERY well organized and run, mostly by volunteers!! Don't forget at the end to visit where they will put a gold star up on the high ceiling, where thousands of others stars are, and they map where that star of your child's is. I'm excited for you!
            We even brought along a nurse, who slept all day at a hotel, and took care of him at night so we could get our sleep!
            Betsy

            On 6/7/07, Wendy < wendyhughes@...> wrote:

             

            Yes, that's a good point.  Sometimes you need to phone the airline in advance to let them know what medical equip you are carrying on board – United Airlines (international flights in our experience are the worst for this) – they need weight, product name, manufacturer name, product number, dimensions and they STILL check the equipment thoroughly and query it before you take it on board!!  I'm sure you will have someone who will arrange your special needs for you and make sure that they can put your son's chair in the hold, so you can have it straight off the flight!!  We had to carry Zak quite a long way at Tampa Airport once because all the wheelchairs were taken – admittedly that was 7 years ago and we've never had a problem since. ..

            Good luck…Wendy xx

             

             

            -----Original Message-----
            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Scott & Betsy Grant
            Sent:
            07 June 2007 17:57

            To: Myotubular_Myopathy@yahoogroups.com
            Subject: Re: [Myotubular_Myopathy] Myotubular Myopathy & Fligh

             

            We have flown a couple of times with Kyle (age 10 now).  Once when he was 7 and once last winter.  When you book your travel (or when  Make-A-Wish books it), be sure to request flights with plenty of connection time.  The last time we traveled, we had to go through gates that didn't have a "Jet-way" that attached to the plane.  As a result, we had to wait until everyone else had gotten off the plane, and they could wheel a lift to the door.  We then had to walk a very long distance to enter the terminal via a door with an elevator, then walk still further to our connecting flight.  On the return flight, we were faced with the same situation, but this time, it was to board the plane.  This time, I picked Kyle up and climbed up the steep stairs to get into the plane.

             

            We have found that it's easier to sit up front for us, but Kyle can go without nebs and other care for longer periods of time.  I know this might all sound kind of scarey, but really the hardest part was deciding what to carry on and what to pack. 

             

            Another thing to point out:  Each time we've traveled, the TSA really checked out our LTV950 and the portable suction very closely.  One time, the TSA agent asked me to open up the LTV, which I asked him "How?"  They aren't trained on a lot of the specialized medical equipement, and didn't really know what to make of it.  When I at least turned it on, they all jumped when it did it's initial "BEEP"...  The joys of travel!

             

            ALL OF THIS ASSIDE, Make-A-Wish does a wonderful job, and you will have a great time!

             

            -Scott

             

            On 6/7/07, masonsparents <masonsparents@...> wrote:

            Have any of you heard of any issues or problems MTM kids have with
            flying on a commercial airliner? Besides the issues related to getting
            the medical equipment on the plane - are there any physical
            problems/risks for these kids? Have you ever flown with your MTM kid?
            Make-A-Wish is arranging for us to take Mason to Disney World in
            Florida, we would have to fly from California.

            Hope you all are well. Mason turns 6 on Tuesday June 12.

            -Scott

             


          • Amanda Hollingsworth
            Betsy, I have to agree with you about Give Kids the World Village. We were just there in January and it was truly amazing. Jacob would rather have stayed there
            Message 5 of 11 , Jun 7, 2007
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              Betsy, I have to agree with you about Give Kids the World Village. We were just there in January and it was truly amazing. Jacob would rather have stayed there vs. going to the parks. It is a magical place!!

              Scott & Staceyanne, Unfortunately I can't offer any advice on flying because we've never flown with Jacob. However, I can't wait to meet you all when you come to FL.
               
              Amanda

              Scott & Betsy Grant <scottnbets@...> wrote:
              I just have to throw in that our stay in the little "village" where Make-A-Wish puts you up is AMAZING. It is well-kept, roses growing outside your villa, 2 in-ground pools, a wonderful little fun area to play when you are not at a park, where there are remote-control boats on a pond, a big toy train, arcade games, etc. Everything is geared for little kids...the talking tree, the dining hall has little chairs and tables with dolls lining the walls, and it's all VERY well organized and run, mostly by volunteers!! Don't forget at the end to visit where they will put a gold star up on the high ceiling, where thousands of others stars are, and they map where that star of your child's is. I'm excited for you!
              We even brought along a nurse, who slept all day at a hotel, and took care of him at night so we could get our sleep!
              Betsy

              On 6/7/07, Wendy < wendyhughes@...> wrote:
               
              Yes, that's a good point.  Sometimes you need to phone the airline in advance to let them know what medical equip you are carrying on board – United Airlines (international flights in our experience are the worst for this) – they need weight, product name, manufacturer name, product number, dimensions and they STILL check the equipment thoroughly and query it before you take it on board!!  I'm sure you will have someone who will arrange your special needs for you and make sure that they can put your son's chair in the hold, so you can have it straight off the flight!!  We had to carry Zak quite a long way at Tampa Airport once because all the wheelchairs were taken – admittedly that was 7 years ago and we've never had a problem since. ..
              Good luck…Wendy xx
               
               
              -----Original Message-----
              From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Scott & Betsy Grant
              Sent:
              07 June 2007 17:57

              To: Myotubular_Myopathy@yahoogroups.com
              Subject: Re: [Myotubular_Myopathy] Myotubular Myopathy & Fligh
               
              We have flown a couple of times with Kyle (age 10 now).  Once when he was 7 and once last winter.  When you book your travel (or when  Make-A-Wish books it), be sure to request flights with plenty of connection time.  The last time we traveled, we had to go through gates that didn't have a "Jet-way" that attached to the plane.  As a result, we had to wait until everyone else had gotten off the plane, and they could wheel a lift to the door.  We then had to walk a very long distance to enter the terminal via a door with an elevator, then walk still further to our connecting flight.  On the return flight, we were faced with the same situation, but this time, it was to board the plane.  This time, I picked Kyle up and climbed up the steep stairs to get into the plane.
               
              We have found that it's easier to sit up front for us, but Kyle can go without nebs and other care for longer periods of time.  I know this might all sound kind of scarey, but really the hardest part was deciding what to carry on and what to pack. 
               
              Another thing to point out:  Each time we've traveled, the TSA really checked out our LTV950 and the portable suction very closely.  One time, the TSA agent asked me to open up the LTV, which I asked him "How?"  They aren't trained on a lot of the specialized medical equipement, and didn't really know what to make of it.  When I at least turned it on, they all jumped when it did it's initial "BEEP"...  The joys of travel!
               
              ALL OF THIS ASSIDE, Make-A-Wish does a wonderful job, and you will have a great time!
               
              -Scott

               
              On 6/7/07, masonsparents <masonsparents@...> wrote:
              Have any of you heard of any issues or problems MTM kids have with
              flying on a commercial airliner? Besides the issues related to getting
              the medical equipment on the plane - are there any physical
              problems/risks for these kids? Have you ever flown with your MTM kid?
              Make-A-Wish is arranging for us to take Mason to Disney World in
              Florida, we would have to fly from California.

              Hope you all are well. Mason turns 6 on Tuesday June 12.

              -Scott
               



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            • Johnson, Tom
              The first time Jeffrey flew we had to give him some breaths with the ambu bag towards the end of a two hour flight (his O2 sats were low). At first we thought
              Message 6 of 11 , Jun 8, 2007
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                The first time Jeffrey flew we had to give him some breaths with the ambu bag towards the end of a two hour flight (his O2 sats were low).  At first we thought it was the flight because he perked up when we started to descend.  However, on the return flight, he did great.  We think he didn’t sleep well before the first flight and he was really tired.  He has flown since then and all went well.  Jeffrey also had a Make-A-Wish trip taken about two years ago July.  All went well.  However, I would suggest once you receive your itinerary, review it and maybe call the airline, hotel or cruise line to verify services needed.  Jeffrey wished for a cruise and my wife called the cruise line to verify an accessible stateroom which was not reserved in the original itinerary.  The cruise line made the change for us.  We also verified services from the airline (most have a special phone number for disabled travelers) and sometimes airlines (for Make-A-Wish travelers) will change connecting flights to non-stops (if available) if your original itinerary had a connection.  The airline changed ours at no additional cost from a connection on the way back from his wish trip to a non-stop (departing flight was already a non-stop).  I was concerned about his electric wheel chair making it to the connection… and in hind-sight, the original connecting flight was delayed and we would have missed our connection so it all worked out for the better!!!

                 

                Flying is fun and Jeffrey really enjoyed it.  In fact, on his first flight, as we were about to land (after he perked up), I heard him say as he was looking out the window “look out for the trees!”  No, we were not that close to the trees.  Just a rookie flyer!

                 

                Make-A-Wish was great and Jeffrey really enjoyed his wish! It was hard to thank Make-A-Wish enough for what they did for Jeffrey… from the first visit to the house to the end of his trip.

                 

                Tom

              • Scott & Betsy Grant
                I have something to add about wheelchairs, flying, and getting around Disney parks. We had heard some horror stories of how motorized wheelchairs sometimes
                Message 7 of 11 , Jun 9, 2007
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                  I have something to add about wheelchairs, flying, and getting around Disney parks.
                  We had heard some horror stories of how motorized wheelchairs sometimes have arrived off of a flight having been damaged. That was not a thought we relished at all. We also tried to picture Kyle driving himself around the busy, somewhat crowded theme parks, trying to concentrate on avoiding running into somebody, vs. us pushing him through while he totally relaxed and took it all in. We decided to go with a simple, generic push chair and not hassle with his motorized one, and we were very glad we did. We brought a special cushion so he would be comfortable. That was in the month of February, and they say it's more crowded in the summer.
                  I don't know if all your park tickets and everything are all set, just thought I'd also mention that we went to Animal Kingdom twice, and still didn't see everything, it was wonderful. The Lion King show is amazing, don't miss it! It's wonderful getting around with your special badge, you get privileged seating, and characters make a point of greeting you and posing for pictures with you.  Finally, if you could include a day at Sea World, (which is not part of Disney, but right there in the same area) it was fantastic! We saw live shows with sea lions and a walrus, the orcas (Shamu), we were with a tour guide who took us through the park backwards ( a trick to avoid the crowds), we spent a long day and still didn't see everything. Again, we had a privileged spot where we could touch the dolphins who swam up close because we were feeding them. Kyle couldn't reach them, so a trainer went out and got one of the dolphins to swim up onto a place where he could reach and touch him. It was a great day.
                  Betsy


                   
                  On 6/8/07, Johnson, Tom <tom.johnson@...> wrote:

                  The first time Jeffrey flew we had to give him some breaths with the ambu bag towards the end of a two hour flight (his O2 sats were low).  At first we thought it was the flight because he perked up when we started to descend.  However, on the return flight, he did great.  We think he didn't sleep well before the first flight and he was really tired.  He has flown since then and all went well.  Jeffrey also had a Make-A-Wish trip taken about two years ago July.  All went well.  However, I would suggest once you receive your itinerary, review it and maybe call the airline, hotel or cruise line to verify services needed.  Jeffrey wished for a cruise and my wife called the cruise line to verify an accessible stateroom which was not reserved in the original itinerary.  The cruise line made the change for us.  We also verified services from the airline (most have a special phone number for disabled travelers) and sometimes airlines (for Make-A-Wish travelers) will change connecting flights to non-stops (if available) if your original itinerary had a connection.  The airline changed ours at no additional cost from a connection on the way back from his wish trip to a non-stop (departing flight was already a non-stop).  I was concerned about his electric wheel chair making it to the connection… and in hind-sight, the original connecting flight was delayed and we would have missed our connection so it all worked out for the better!!!

                   

                  Flying is fun and Jeffrey really enjoyed it.  In fact, on his first flight, as we were about to land (after he perked up), I heard him say as he was looking out the window "look out for the trees!"  No, we were not that close to the trees.  Just a rookie flyer!

                   

                  Make-A-Wish was great and Jeffrey really enjoyed his wish! It was hard to thank Make-A-Wish enough for what they did for Jeffrey… from the first visit to the house to the end of his trip.

                   

                  Tom


                • Elizabeth Peil
                  Happy 6th Birthday Mason!!!! I hope you have a wonderful time at Disney World. Hugs and Kisses, Chuck, Liz, Pollux, Chaz and Aubrey ... Don t pick lemons.
                  Message 8 of 11 , Jun 12, 2007
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                    Happy 6th Birthday Mason!!!!   I hope you have a wonderful time at Disney World. 
                     
                    Hugs and Kisses,
                     
                    Chuck, Liz, Pollux, Chaz and Aubrey


                    Don't pick lemons.
                    See all the new 2007 cars at Yahoo! Autos.
                  • Abbie harrison
                    Happy Birthday Mason. Congrats on getting to go to Disney World. I am sure you ll have a blast! All the best, Abbie Howeth Elizabeth Peil
                    Message 9 of 11 , Jun 12, 2007
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                      Happy Birthday Mason.  Congrats on getting to go to Disney World.  I am sure you'll have a blast!
                      All the best,
                      Abbie Howeth

                      Elizabeth Peil <elz0221@...> wrote:
                      Happy 6th Birthday Mason!!!!   I hope you have a wonderful time at Disney World. 
                       
                      Hugs and Kisses,
                       
                      Chuck, Liz, Pollux, Chaz and Aubrey

                      Don't pick lemons.
                      See all the new 2007 cars at Yahoo! Autos.

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