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3808Re: [Myotubular_Myopathy] Update

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  • Kimberly Kowalski
    Dec 10, 2006
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      i am sorry to hear that kaylee is back in the
      hospital. i am praying for her and strength for
      everyone. unfortuntely we can relate all too well as
      sam is back in the hospital again. this time it is not
      too bad but any admission is not really a good one.
      sam doesnt have a port but same as everyone else he is
      an awful stick. the sicker he gets, the harder it is
      to find a viable one. it is painful for him and
      painful for us to watch.

      shannon - welcome home javad! i am sure you are all
      happy to be home together again.

      hope everyone has a healthy winter from here on out,
      --- Abbie harrison <abbiesharrison@...> wrote:

      > Darlene,
      > I will definitely be praying fo ryour father.
      > Hopefully he will recover soon and be back to his
      > old self.
      > On other news, Kaylee is back in the hospital with
      > a full blown case of pneumonia this time. She is
      > intubated and slightly sedated, but at least she is
      > feeling better and able to relax for a few days
      > without having to struggle to breath. Some of the
      > doctors are still pushing for the trach, but others
      > seem to believe in the possibility of weening her
      > down off the vent and back to her old self. Also
      > due to Kaylees poor veins, we have decided to have
      > them put in a venous access port for easier IV
      > access. Do any of the other children have this?
      > Because I know Kaylees veins arent worth anything.
      > We will keep you all updated and hope that
      > everyone else is well during this season.
      > Ryan and Abbie
      > Darlene <dm4462@...> wrote:
      > Hi All,
      > It's been awhle since i really posted. Things have
      > been
      > crazy around here. My Dad was in an auto accident
      > and is
      > still in the Shock Trauma. It's been 6 weeks now. We
      > could
      > really use some prayers to get him home before
      > Christmas.
      > To all the new comers to the group. Welcome, I hope
      > you find
      > it as comforting and supportive as we do. Without
      > this group
      > we would have gone crazy with all the stuff the
      > doctor have
      > told us. It's comforting knowing there is someone
      > out there
      > that knows what you are going through.
      > To all that have been in the hospital. I hope you
      > are all home
      > by now and on the road to feeling better.
      > Kyle and Connor have been doing great. Kyle has done
      > very well
      > in school and in his therapies. Especially, Speech,
      > he continues
      > to improve in voice and signing.
      > Hope all is well with everyone.
      > Take care,
      > Darlene

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