- 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
> > to communicate with others who could offer me advice.
> > Helene
> 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
> a traech and had a Laproscopic Fundoplication. Both were done whenhe
> was a few months old. He was diagnosed at 1 month old and is partof
> Gail Herman's study. He can sit by himself unsupported and he hason
> started to talk alot lately. He has a Passey Muir Valve. He is
> a Vent at night. It is a Pumonetics 950. This vent is about thesize
> of a laptop PC so it is convienient for traveling. It has amore
> cigarrette lighter attachment for the car. If you want to know
> about any of these things or if you just want to talk let me know.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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