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5475Re: Introducing Myself

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  • bv_mixednuts
    Jan 2, 2008
      --- In Myotubular_Myopathy@yahoogroups.com, "DARLENE MILLER"
      <dm4462@...> wrote:
      >
      > Hi Virginia
      >
      > Welcome to the group. My name is Darlene. I have
      > two grandsons with x-linked MTM. Kyle just turned
      > 6 years old on the 15th and Connor is 2 years old.
      > I'm Kyle's primary caregiver. This is a great place
      > for information and support. Glad to hear
      > Christopher is doing so well. Does Benjamin show
      > any signs of MTM?
      >
      > Take care
      > Darlene
      >
      > ----- Original Message -----
      > From: bv_mixednuts<mailto:bv_mixednuts@...>
      > To:
      Myotubular_Myopathy@yahoogroups.com<mailto:Myotubular_Myopathy@yahoogroups.com>

      > Sent: Friday, December 28, 2007 4:02 PM
      > Subject: [Myotubular_Myopathy] Introducing Myself
      >
      >
      > Hi i just wanted to introduce myself. I am Virginia and I have two
      > sons. Benjamin is 2 and Christopher is 10 weeks. Christopher was
      > diagnosed with myotubular myopathy a month ago through a muscle
      > biopsy. We have genict tests outstanding to see if it is X Linked but
      > the docs are pretty sure he has x-linked mtm. We are doing okay and
      > hoping we will be able to bring him home in 4-6 weeks if we dont hit
      > anymore bumps. So far he has been healthy other then a blood
      infection.
      > Christopher had surgery yesterday for a tracheotomy, g-tube, and a
      > ladds procedure to fix an intestinal malrotation they discovered.
      > Christopher went through surgery with no problems and is doing really
      > well. They put him on cpap just a few hours ago and he was doing well
      > when i left the hospital.
      > Anyway we live just south of Seattle WA. Christopher was born at our
      > local hospital and transfered to Swedish NICU for 3 weeks then to the
      > PICU for 4weeks and he was moved to Children's hospital 3 weeks ago
      > once we found out his diagnosis.
      > So that's the basics, hope to get to know some of you.
      > Virginia
      >
      Darlene,
      Benjamin our older son does not show signs of MTM but we honestly
      don't know what to look for. Benjamin is as far as we can see a
      healthy 2 year old. He has hit all of his development milestones
      early or on target so we pray he will not be affected by MTM
      Do both of your grandsons have MTM with the same severity? Are they
      ventilated, how are they doing?
      Thank you,
      Virginia
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