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5484Re: Introducing Myself

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  • jennaleigh85
    Jan 5, 2008
      Hello Virginia,
      My name is Jenna, mother of a 2 1/2 year old little girl named Allie (Allison). She was
      diagnosed with CNM after her second muscle biopsy just before she turned two. She is
      fed through G-tube only, she does not walk or stand by her self however on
      thanksgiving day she crawled for the first time ever and has not stopped since.
      I am happy to hear that your son Christopher is doing well and I'm very glad that you
      found us! As I'm sure you've already found, this group is amazing!




      --- In Myotubular_Myopathy@yahoogroups.com, "bv_mixednuts" <bv_mixednuts@...>
      wrote:
      >
      > 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
      >
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