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Re: [Myotubular_Myopathy] update on Kyle

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  • redscootee@webtv.net
    (((((WTG KYLE))))) What great news! He is doing a super job. Keep us posted. take care pat
    Message 1 of 52 , Apr 29 11:46 PM
      (((((WTG KYLE)))))
      What great news! He is doing a super job.
      Keep us posted.
      take care pat
    • Kiera Merriam
      Oops... Sorry Darlene. I read your name but had Ann in mind when I sent the response... ...
      Message 52 of 52 , Aug 9, 2005
        Oops... Sorry Darlene. I read your name but had Ann in
        mind when I sent the response...



        --- ANN MILLER <dm4462@...> wrote:

        > Hi Kiera,
        >
        > Glad to hear Liam is doing good. I was worried
        > about
        > him. He has been in our prayers everyday. Is he
        > on
        > Robinul or anything to help with the secretions?
        >
        > Kyle was about 4 months old before we started
        > noticing
        > any big improvements in him. His biggest
        > improvements
        > were when he came home. He came home when he was
        > 6 months old. After two weeks home, he started
        > trying
        > to touch the toys I had hanging in his crib. We
        > have our
        > good days and our bad days. But there have been
        > more
        > good than bad over the last 3 1/2 years. It's hard
        > to
        > believe he will be 4 years old in December. People
        > who
        > saw him when he was born and haven't seen him in
        > awhile
        > say it's hard to believe it's the same child when
        > they see
        > him now.
        >
        > We will continue to pray for improvements in Liam.
        >
        > God Bless,
        > Darlene
        >
        > ----- Original Message -----
        > From: Kiera
        > Merriam<mailto:kieramarie1973@...>
        > To:
        >
        Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>
        >
        > Sent: Wednesday, August 03, 2005 3:38 PM
        > Subject: [Myotubular_Myopathy] Liam Update
        >
        >
        > Hi everyone. Glad to hear about everyone's summer.
        > Sounds like Kyle is having a grand time. And
        > Shannon,
        > I pray that Javad's time is coming.
        >
        > Liam is doing okay. They had been trying him on a
        > new
        > breathing aparatus, Vapotherm (widely used in the
        > States but new to Canada) but he wasn't showing
        > improvement and requiring tons of suctioning. We
        > were
        > making the switch from Bubble CPAP to Vapotherm
        > gradually, increasing the number of hours each day
        > as
        > tolerated. Isaiah and I went away for a few days
        > in
        > July for a much needed reprieve and the day before
        > we
        > got back he blocked, requiring bagging so they put
        > him
        > back on Bubble full time. We're not sure if it's
        > that
        > Liam is not improving or that the Vapotherm isn't
        > working so he's been back on Bubble now and seems
        > to
        > be doing better. Today we had him off for a bath
        > and
        > some play time, one hour total, and he seemed to
        > do
        > okay. Only time will tell.
        >
        > We're talking about feeding tubes. At this point
        > they
        > are considering a G tube but they want to do a Ph
        > probe first to see if there's significant reflux.
        > If
        > there is, we might consider a GJ.
        >
        > He's an incredibly playful and happy little guy,
        > always smiling and interacting, despite being
        > attached
        > to various aparatus 24/7 and having suction
        > catheters
        > shoved down his throat and nose. We've hardly
        > heard
        > any sound coming out of his mouth until the other
        > day
        > when he discovered that if he growls, he becomes
        > much
        > more audible. It was quite funny to watch.
        >
        > Anyway that's all for now. Thanks all for being
        > there
        > and hope you enjoy the rest of your summer.
        >
        > Kiera, Isaiah and Liam
        >
        >
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