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  • bubblelips8151972
    Feb 2, 2007
      --- In Myotubular_Myopathy@yahoogroups.com, robert.shapiro@... wrote:
      >
      > --- In Myotubular_Myopathy@y..., "Helene" <rhccr@o...> wrote:
      > > Hi. My 13 month old so was diagnosed this past Thursday. Would
      > like
      > > to communicate with others who could offer me advice.
      > >
      > > Helene
      >
      > Hi,
      > My son Jay Jay has X-linked Myotubular Myopathy. He attends public
      > school 5 days a week for 2 hours a day. He will be 4 in July. He
      has
      > a traech and had a Laproscopic Fundoplication. Both were done when
      he
      > was a few months old. He was diagnosed at 1 month old and is part
      of
      > Gail Herman's study. He can sit by himself unsupported and he has
      > started to talk alot lately. He has a Passey Muir Valve. He is
      on
      > a Vent at night. It is a Pumonetics 950. This vent is about the
      size
      > of a laptop PC so it is convienient for traveling. It has a
      > cigarrette lighter attachment for the car. If you want to know
      more
      > about any of these things or if you just want to talk let me know.
      > Bob


      So your son is 4? My son too is on a LTV 950 which I think is great.
      Is he saying words? Sentences? What exactly is he saying with the
      passy muir? My son too wears it but only makes sounds. He is going
      to be 4 in April.
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