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5474Re: Introducing Myself

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  • bv_mixednuts
    Jan 2, 2008
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      --- In Myotubular_Myopathy@yahoogroups.com, kristin.burlage@... wrote:
      > Hi Virginia,
      > Glad to hear your son is doing well post surgery. My son Justin is
      4 1/2 and was diagnosed with MTM1 at 4 weeks old. It's good that you
      found this site there is a lot of very helpful suggestions and support.
      > Kristin Bonny
      > -------------- Original message --------------
      > From: "bv_mixednuts" <bv_mixednuts@...>
      > 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
      Glad to meet you. I've been off line for a few days good to see so
      many others are out there. We've had a hard time finding anyone
      through the Parent Match program at the hospital.
      I hope your son is doing well.
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