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5477Re: [Myotubular_Myopathy] Re: Introducing Myself

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    Jan 2, 2008
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      Hi Virginia,
      Glad to hear Benjamin is doing fine.   You will
      definitely have your hands full with a 2 year old
      and 3 month old. 
      Both boys have x-linked MTM but they are
      different in many ways.  Both boys are trached
      and have g-tubes.  Connor had 6 cardiac
      arrests when he was between the age of
      4 months and 6 months.  He is mostly vent
      dependant.  He does come off the vent about
      2 hours a day.  Connor can't sit up and must
      have someone near him at all times.  Kyle on
      the other hand, is very active.  He attends
      regular Kindergarten class.  He is off the vent
      during the day except when sick.  Only uses
      it at night.  Kyle has operated a power chair
      since he was 3 1/2 years old.  He can also use a
      manual chair as long as it is not on thick carpet.
      He is very vocal with his speaking valve.  Kyle
      will try to do anything his older sister does.  He
      knows sign language and we are in the process
      of getting him an augmentive communication
      device.  Both Connor and Kyle are doing great.
      We have managed to keep them out of the
      hospital now for Connor it has been a little over
      a year and Kyle will be 2 years in March.
      I'm glad you found this group.  It has been a
      great help to our family.  Without it I don't know
      what we would have done.  The support is
      unbelievable.  If you have any questions, don't
      hesitate to ask.  One of us will be able to help or
      at least put you in the right direction. 
      Take care,
      ----- Original Message -----
      Sent: Wednesday, January 02, 2008 7:05 PM
      Subject: [Myotubular_Myopathy] Re: Introducing Myself

      --- 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
      > 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
      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,

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