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Flying

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  • Rachel
    We might be going to Malta or Spain we have 2 wheel chairs and 2 milk machines all there milk there medidence Sent from my iPhone
    Message 1 of 14 , Feb 16, 2009
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      We might be going to Malta or Spain we have 2 wheel chairs and 2 milk machines all there milk there medidence
      Sent from my iPhone
    • Rachel
      Also forgot to ask with there illness will there need a doctors note or anything to say that there fit eough to fly we have never taken the kids out of the uk
      Message 2 of 14 , Feb 16, 2009
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        Also forgot to ask with there illness will there need a doctors note or anything to say that there fit eough to fly we have never taken the kids out of the uk we have always stayed within the uk
      • Sally Eubanks
        Rachel-- I m no expert, but I think there s a form you need to travel with, just in case anything happens when you re out of the UK. Some sort of European
        Message 3 of 14 , Feb 17, 2009
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          Rachel--

          I'm no expert, but I think there's a form you need to travel with, just in case anything happens when you're out of the UK. Some sort of European form so the other health insurance systems will take you when someone gets sick.

          We're looking into everything it entails flying with Oscar, and at most of the large airlines there's a person responsible for helping passengers with health issues and disabilities fly. I can't tell you from experience, but I imagine they'd be most helpful.

          Good luck getting to spain. Sounds fantastic!

          Sally


          --- On Tue, 2/17/09, Rachel <rachel_wrigley@...> wrote:

          > From: Rachel <rachel_wrigley@...>
          > Subject: [Myotubular_Myopathy] Flying
          > To: "Myotubular_Myopathy@yahoogroups.com" <Myotubular_Myopathy@yahoogroups.com>
          > Date: Tuesday, February 17, 2009, 2:53 AM
          > Also forgot to ask with there illness will there need a
          > doctors note or anything to say that there fit eough to fly
          > we have never taken the kids out of the uk we have always
          > stayed within the uk
        • Gary
          Hi Rachel, Just to let you know that when we took Harry on holiday we had a letter from the hospital explaining his condition and his medications. We were
          Message 4 of 14 , Feb 17, 2009
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             Hi Rachel,
             
            Just to let you know that when we took Harry on holiday we had a letter from the hospital explaining his condition and his medications.  We were incrediibly lucky in that when we saw his consultant and asked for the letter - there was a Spanish trainee doctor there who was able to translate it into spanish for us too.  We informed the airline and checked that it would be ok if he needed a feed mid- flight via his pump.  They also gave us extra baggage allowance for his bottled feeds, pump, suction machine etc plus his wheelchair.  They boarded us first via the ambulift as he coudn't manage the stairs up to the plane. 
             
            I'm not sure if you have sorted out insurance yet but we were recommended a company near Blackpool who were excellent. http://www.able2travel.com/  tel 0870 750 6711.  Alternatively, the Post Office Travel Insurance were quite good too.
             
            Hope this has been of some help.
             
            Have a great holiday I'm sure the boys will love it.
             
            Gary Jill Hayley & Harry
             
             

            To: Myotubular_Myopathy@yahoogroups.com
            From: rachel_wrigley@...
            Date: Tue, 17 Feb 2009 01:53:13 +0000
            Subject: [Myotubular_Myopathy] Flying


            Also forgot to ask with there illness will there need a doctors note or anything to say that there fit eough to fly we have never taken the kids out of the uk we have always stayed within the uk




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          • Steven Pepi
            Not sure if your child requires oxygen at times? Do they allow oxygen tanks on the plane? Best Regards, Steven Pepi Port Operations Manager Hoegh Autoliners
            Message 5 of 14 , Feb 17, 2009
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              Not sure if your child requires oxygen at times? Do they allow oxygen tanks
              on the plane?



              Best Regards,
              Steven Pepi
              Port Operations Manager
              Hoegh Autoliners Inc.
              516-650-4833 Mobile
              201-455-5020 Office
              201-455-5019 Fax


              ----- Original Message -----
              From: Gary [garybeck95@...]
              Sent: 02/17/2009 04:30 PM GMT
              To: <myotubular_myopathy@yahoogroups.com>
              Subject: RE: [Myotubular_Myopathy] Flying



               Hi Rachel,

              Just to let you know that when we took Harry on holiday we had a letter
              from the hospital explaining his condition and his medications.  We were
              incrediibly lucky in that when we saw his consultant and asked for the
              letter - there was a Spanish trainee doctor there who was able to translate
              it into spanish for us too.  We informed the airline and checked that it
              would be ok if he needed a feed mid- flight via his pump.  They also gave
              us extra baggage allowance for his bottled feeds, pump, suction machine etc
              plus his wheelchair.  They boarded us first via the ambulift as he coudn't
              manage the stairs up to the plane.

              I'm not sure if you have sorted out insurance yet but we were recommended a
              company near Blackpool who were excellent. http://www.able2travel.com/%c2%a0 tel
              0870 750 6711.  Alternatively, the Post Office Travel Insurance were quite
              good too.

              Hope this has been of some help.

              Have a great holiday I'm sure the boys will love it.

              Gary Jill Hayley & Harry



              To: Myotubular_Myopathy@yahoogroups.com
              From: rachel_wrigley@...
              Date: Tue, 17 Feb 2009 01:53:13 +0000
              Subject: [Myotubular_Myopathy] Flying


              Also forgot to ask with there illness will there need a doctors note or
              anything to say that there fit eough to fly we have never taken the kids
              out of the uk we have always stayed within the uk




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            • cleibo1
              We just got back from Disney. We didn t have O2, but we did have Spencer s vent, a battery, a suction machine, his emeergency bag and of course the DVD player.
              Message 6 of 14 , Feb 17, 2009
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                We just got back from Disney. We didn't have O2, but we did have
                Spencer's vent, a battery, a suction machine, his emeergency bag and
                of course the DVD player. Call the airline regarding the O2. There
                is some rule about flying with O2, but I dont' know it. Spencer has
                an electric wheelchair. What we did was check in and told the airline
                we were there. We boarded first. Spencer drove his chair all the way
                to the plane door, then my husband carried him into the 1st row. An
                attendant took the chair and stowed it below the plane. When we
                landed, they brought it up for us.
                Regarding his medicines, we got perscriptions for ALL of the meds we
                needed to take with us, including feeding. When we went through
                security they were fine with everything. they did "test" some of the
                meds. Not sure what that meant, but it was fine.
                Corey


                --- In Myotubular_Myopathy@yahoogroups.com, Steven Pepi
                <Steven.Pepi@...> wrote:
                >
                > Not sure if your child requires oxygen at times? Do they allow
                oxygen tanks
                > on the plane?
                >
                >
                >
                > Best Regards,
                > Steven Pepi
                > Port Operations Manager
                > Hoegh Autoliners Inc.
                > 516-650-4833 Mobile
                > 201-455-5020 Office
                > 201-455-5019 Fax
                >
                >
                > ----- Original Message -----
                > From: Gary [garybeck95@...]
                > Sent: 02/17/2009 04:30 PM GMT
                > To: <myotubular_myopathy@yahoogroups.com>
                > Subject: RE: [Myotubular_Myopathy] Flying
                >
                >
                >
                >  Hi Rachel,
                >
                > Just to let you know that when we took Harry on holiday we had a
                letter
                > from the hospital explaining his condition and his medications.  We
                were
                > incrediibly lucky in that when we saw his consultant and asked for
                the
                > letter - there was a Spanish trainee doctor there who was able to
                translate
                > it into spanish for us too.  We informed the airline and checked
                that it
                > would be ok if he needed a feed mid- flight via his pump.  They
                also gave
                > us extra baggage allowance for his bottled feeds, pump, suction
                machine etc
                > plus his wheelchair.  They boarded us first via the ambulift as he
                coudn't
                > manage the stairs up to the plane.
                >
                > I'm not sure if you have sorted out insurance yet but we were
                recommended a
                > company near Blackpool who were excellent.
                http://www.able2travel.com/%c2%a0 tel
                > 0870 750 6711.  Alternatively, the Post Office Travel Insurance
                were quite
                > good too.
                >
                > Hope this has been of some help.
                >
                > Have a great holiday I'm sure the boys will love it.
                >
                > Gary Jill Hayley & Harry
                >
                >
                >
                > To: Myotubular_Myopathy@yahoogroups.com
                > From: rachel_wrigley@...
                > Date: Tue, 17 Feb 2009 01:53:13 +0000
                > Subject: [Myotubular_Myopathy] Flying
                >
                >
                > Also forgot to ask with there illness will there need a doctors
                note or
                > anything to say that there fit eough to fly we have never taken the
                kids
                > out of the uk we have always stayed within the uk
                >
                >
                >
                >
                > Get Hotmail on your mobile from Vodafone Try it Now!
                >
              • rachel wriglry
                hi all both regan and marconi do not require 02 but we do have 2 wheel chairs and a sution machine 2 milk machines and all the milk for there feeds there dried
                Message 7 of 14 , Feb 17, 2009
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                  hi all
                  both regan and marconi do not require 02 but we do have 2 wheel chairs and a sution machine 2 milk machines and all the milk for there feeds there dried meds when there ill a cough assist machine but i will deff so what doc says we go on thursday for a checkup so going to see what he says about the letter i could take with me thank u all for your advice its helped a great deal thanks again
                  Rachel&boys

                  --- On Tue, 17/2/09, cleibo1 <cleibo1@...> wrote:
                  From: cleibo1 <cleibo1@...>
                  Subject: [Myotubular_Myopathy] Re: Flying
                  To: Myotubular_Myopathy@yahoogroups.com
                  Date: Tuesday, 17 February, 2009, 6:51 PM

                  We just got back from Disney. We didn't have O2, but we did have
                  Spencer's vent, a battery, a suction machine, his emeergency bag and
                  of course the DVD player. Call the airline regarding the O2. There
                  is some rule about flying with O2, but I dont' know it. Spencer has
                  an electric wheelchair. What we did was check in and told the airline
                  we were there. We boarded first. Spencer drove his chair all the way
                  to the plane door, then my husband carried him into the 1st row. An
                  attendant took the chair and stowed it below the plane. When we
                  landed, they brought it up for us.
                  Regarding his medicines, we got perscriptions for ALL of the meds we
                  needed to take with us, including feeding. When we went through
                  security they were fine with everything. they did "test" some of the
                  meds. Not sure what that meant, but it was fine.
                  Corey

                  --- In Myotubular_Myopathy @yahoogroups. com, Steven Pepi
                  <Steven.Pepi@ ...> wrote:
                  >
                  > Not sure if your child requires oxygen at times? Do they allow
                  oxygen tanks
                  > on the plane?
                  >
                  >
                  >
                  > Best Regards,
                  > Steven Pepi
                  > Port Operations Manager
                  > Hoegh Autoliners Inc.
                  > 516-650-4833 Mobile
                  > 201-455-5020 Office
                  > 201-455-5019 Fax
                  >
                  >
                  > ----- Original Message -----
                  > From: Gary [garybeck95@ ...]
                  > Sent: 02/17/2009 04:30 PM GMT
                  > To: <myotubular_myopathy @yahoogroups. com>
                  > Subject: RE: [Myotubular_ Myopathy] Flying
                  >
                  >
                  >
                  >  Hi Rachel,
                  >
                  > Just to let you know that when we took Harry on holiday we had a
                  letter
                  > from the hospital explaining his condition and his medications.  We
                  were
                  > incrediibly lucky in that when we saw his consultant and asked for
                  the
                  > letter - there was a Spanish trainee doctor there who was able to
                  translate
                  > it into spanish for us too.  We informed the airline and checked
                  that it
                  > would be ok if he needed a feed mid- flight via his pump.  They
                  also gave
                  > us extra baggage allowance for his bottled feeds, pump, suction
                  machine etc
                  > plus his wheelchair.  They boarded us first via the ambulift as he
                  coudn't
                  > manage the stairs up to the plane.
                  >
                  > I'm not sure if you have sorted out insurance yet but we were
                  recommended a
                  > company near Blackpool who were excellent.
                  http://www.able2tra vel.com/  tel
                  > 0870 750 6711.  Alternatively, the Post Office Travel Insurance
                  were quite
                  > good too.
                  >
                  > Hope this has been of some help.
                  >
                  > Have a great holiday I'm sure the boys will love it.
                  >
                  > Gary Jill Hayley & Harry
                  >
                  >
                  >
                  > To: Myotubular_Myopathy @yahoogroups. com
                  > From: rachel_wrigley@ ...
                  > Date: Tue, 17 Feb 2009 01:53:13 +0000
                  > Subject: [Myotubular_ Myopathy] Flying
                  >
                  >
                  > Also forgot to ask with there illness will there need a doctors
                  note or
                  > anything to say that there fit eough to fly we have never taken the
                  kids
                  > out of the uk we have always stayed within the uk
                  >
                  >
                  >
                  >
                  > Get Hotmail on your mobile from Vodafone Try it Now!
                  >


                • The Winns
                  Have any of your children had surgery on theirs eyes? Allie s eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can t until
                  Message 8 of 14 , Feb 17, 2009
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                    Have any of your children had surgery on theirs eyes?
                    Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                    Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                     
                    ~Jenna~

                  • Gary
                    Hi Jenna, My son Harry had surgery to both eyes when he was around 3-4 years old. One eye drifted outwards and the other did the opposite. This was more
                    Message 9 of 14 , Feb 18, 2009
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                      Hi Jenna,
                       
                      My son Harry had surgery to both eyes when he was around 3-4 years old.  One eye drifted outwards and the other did the opposite.   This was more obvious when he was tired.  It seems the surgeon tightened the muscle of the eye that drifted outwards and made the other muscle a little weaker.  The operation went well and he was only in discomfort for a very short time after the op.  Six years on and the eye that drifts outwards still does it sometimes.  Again this is more noticable when he's tired.  Harry also wears spectacles to correct quite severe short sightedness.
                       
                       
                      Hope this helps.  Good luck Allie
                       
                      Gary 
                       
                       


                      To: Myotubular_Myopathy@yahoogroups.com
                      From: jennaleigh85@...
                      Date: Tue, 17 Feb 2009 18:30:07 -0800
                      Subject: [Myotubular_Myopathy] Eye Surgery


                      Have any of your children had surgery on theirs eyes?
                      Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                      Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                       
                      ~Jenna~




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                    • Betsy Grant
                      My son had an eye that seemed to be getting more and more lazy for awhile but it hasn t bothered for some time now. However, I had eye surgery last year to
                      Message 10 of 14 , Feb 18, 2009
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                        My son had an eye that seemed to be getting more and more lazy for awhile but it hasn't bothered for some time now. However, I had eye surgery  last year to correct an eye that kept turning to the side! (It was getting bad, but I dreaded the thought of surgery). But it turns out it really was not a painful or difficult thing to go through at all. It was just a little sore and red for a few days afterwards. Now my eye bothers me much less and I have more control over it, although it still turns out now and then. I guess for adults  it's never a cure!
                        Betsy

                        On Tue, Feb 17, 2009 at 9:30 PM, The Winns <jennaleigh85@...> wrote:

                        Have any of your children had surgery on theirs eyes?
                        Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                        Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                         
                        ~Jenna~


                      • The Winns
                        Thanks Gary, I m feeling a little less nervous now. My daughter is turning four in April so she s right around the same age that your son had this surgery
                        Message 11 of 14 , Feb 18, 2009
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                          Thanks Gary, I'm feeling a little less nervous now. My daughter is turning four in April so she's right around the same age that your son had this surgery done. Both of Allie's eyes drift outward and just like your son it's more obvious when she is tired. I suspected that her eyes still may drift outward from time to time even after the surgery. I was told that the surgery will have to be repeated later on in her life.
                          Thanks again,
                           
                          ~Jenna~
                           

                          --- On Wed, 2/18/09, Gary <garybeck95@...> wrote:
                          From: Gary <garybeck95@...>
                          Subject: RE: [Myotubular_Myopathy] Eye Surgery
                          To: myotubular_myopathy@yahoogroups.com
                          Date: Wednesday, February 18, 2009, 6:07 AM


                          Hi Jenna,
                           
                          My son Harry had surgery to both eyes when he was around 3-4 years old.  One eye drifted outwards and the other did the opposite.   This was more obvious when he was tired.  It seems the surgeon tightened the muscle of the eye that drifted outwards and made the other muscle a little weaker.  The operation went well and he was only in discomfort for a very short time after the op.  Six years on and the eye that drifts outwards still does it sometimes.  Again this is more noticable when he's tired.  Harry also wears spectacles to correct quite severe short sightedness.
                           
                           
                          Hope this helps.  Good luck Allie
                           
                          Gary 
                           
                           


                          To: Myotubular_Myopathy @yahoogroups. com
                          From: jennaleigh85@ yahoo.com
                          Date: Tue, 17 Feb 2009 18:30:07 -0800
                          Subject: [Myotubular_ Myopathy] Eye Surgery


                          Have any of your children had surgery on theirs eyes?
                          Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                          Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                           
                          ~Jenna~




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                        • The Winns
                          Hi Betsy! Thanks for responding! It s so comforting to hear that your surgery wasn t difficult or too painful. I m hearing this from many people who had eye
                          Message 12 of 14 , Feb 18, 2009
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                            Hi Betsy!
                            Thanks for responding! It's so comforting to hear that your surgery wasn't difficult or too painful. I'm hearing this from many people who had eye surgery and I'm feeling much better about it now.
                             
                            ~Jenna~

                            --- On Wed, 2/18/09, Betsy Grant <betsy@...> wrote:
                            From: Betsy Grant <betsy@...>
                            Subject: Re: [Myotubular_Myopathy] Eye Surgery
                            To: Myotubular_Myopathy@yahoogroups.com
                            Date: Wednesday, February 18, 2009, 7:33 AM

                            My son had an eye that seemed to be getting more and more lazy for awhile but it hasn't bothered for some time now. However, I had eye surgery  last year to correct an eye that kept turning to the side! (It was getting bad, but I dreaded the thought of surgery). But it turns out it really was not a painful or difficult thing to go through at all. It was just a little sore and red for a few days afterwards. Now my eye bothers me much less and I have more control over it, although it still turns out now and then. I guess for adults  it's never a cure!
                            Betsy

                            On Tue, Feb 17, 2009 at 9:30 PM, The Winns <jennaleigh85@ yahoo.com> wrote:
                            Have any of your children had surgery on theirs eyes?
                            Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                            Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                             
                            ~Jenna~



                          • coleyoley825
                            my son had ptosis too and he had a muellerectomy. i like that surgery better than others that were offered because there is not any scaring on the outside of
                            Message 13 of 14 , Feb 18, 2009
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                              my son had ptosis too and he had a muellerectomy. i like that surgery
                              better than others that were offered because there is not any scaring
                              on the outside of the lid. they flip the lid cut some of the tissue out
                              and sew it back so it makes the lid go up more.

                              the only thing that we had issues with was swelling. make sure you
                              finish ALL of the prednisone they give you. and when they say its all
                              about ice packs, belive them. andre wouldnt keep his on so i didnt
                              force the isue. man was that a mistake. but now his eys are so bright
                              and beautiful! he loves it too because he used to have to hold his eyes
                              open so he could read or watch tv. then because of the muscle weakness
                              he could only hold them up for so long. ...poor baby...

                              i hope it goes well!!!!!

                              --- In Myotubular_Myopathy@yahoogroups.com, The Winns
                              <jennaleigh85@...> wrote:
                              >
                              >
                              > Have any of your children had surgery on theirs eyes?
                              > Allie's eyes are both lazy. She needs to wear corrective lenses for
                              her nearsightedness but can't until her lazy eyes get fixed because
                              wearing glasses make them worse.
                              > Her surgery is scheduled for Thursday morning and I'm just really
                              nervous about it. Their going to move the muscles in her eyes to the
                              correct position. My thought on this is that if her eyes are lazy due
                              to her muscle weakness how is surgery going to fix it? 
                              >  
                              > ~Jenna~
                              >
                            • The Winns
                              The hospital called me today and decided to do a spur of the moment echo-cardiogram. The anesthesiologist wanted it done before Allie s eye surgery tomorrow
                              Message 14 of 14 , Feb 18, 2009
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                                The hospital called me today and decided to do a spur of the moment echo-cardiogram. The anesthesiologist wanted it done before Allie's eye surgery tomorrow morning just for persuasion.
                                I got the results back tonight that the left ventricle (the main pumping chamber to the heart) is weak with an ejection fraction of 47%. The surgery has been canceled until we see a pediatric cardiologist.
                                Their has never been any known concern with her heart before so this is all new to us.  I'm curious to know everyone elses experience with this.
                                Thanks,
                                ~Jenna~
                                 

                                --- On Wed, 2/18/09, Gary <garybeck95@...> wrote:
                                From: Gary <garybeck95@...>
                                Subject: RE: [Myotubular_Myopathy] Eye Surgery
                                To: myotubular_myopathy@yahoogroups.com
                                Date: Wednesday, February 18, 2009, 6:07 AM


                                Hi Jenna,
                                 
                                My son Harry had surgery to both eyes when he was around 3-4 years old.  One eye drifted outwards and the other did the opposite.   This was more obvious when he was tired.  It seems the surgeon tightened the muscle of the eye that drifted outwards and made the other muscle a little weaker.  The operation went well and he was only in discomfort for a very short time after the op.  Six years on and the eye that drifts outwards still does it sometimes.  Again this is more noticable when he's tired.  Harry also wears spectacles to correct quite severe short sightedness.
                                 
                                 
                                Hope this helps.  Good luck Allie
                                 
                                Gary 
                                 
                                 


                                To: Myotubular_Myopathy @yahoogroups. com
                                From: jennaleigh85@ yahoo.com
                                Date: Tue, 17 Feb 2009 18:30:07 -0800
                                Subject: [Myotubular_ Myopathy] Eye Surgery


                                Have any of your children had surgery on theirs eyes?
                                Allie's eyes are both lazy. She needs to wear corrective lenses for her nearsightedness but can't until her lazy eyes get fixed because wearing glasses make them worse.
                                Her surgery is scheduled for Thursday morning and I'm just really nervous about it. Their going to move the muscles in her eyes to the correct position. My thought on this is that if her eyes are lazy due to her muscle weakness how is surgery going to fix it? 
                                 
                                ~Jenna~




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