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3802Re: [Myotubular_Myopathy] Update

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  • DARLENE MILLER
    Dec 10, 2006
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      Hi Abbie,
       
      Sorry to hear Kaylee is back in the hospital.  Hopefully she
      will be home soon. We are all praying that this will be her
      last sickness for this winter and she will be healthy, happy,
      and back to her old self in no time. 
       
      Kyle has never had a port, but Connor had one when he
      was in the hospital after his cardiac arrests.  It made it
      easier for him.  They would come in all hours of the day
      and night and try to get blood.  How could anyone get
      any sleep/rest like that.  He was such a little guy at the
      time and his arms were always black and bule.  So we
      had them put one in so they didn't have to stick him so
      much. Anyway they took it out after he came home.
       
      Take care
      Darlene
      ----- Original Message -----
      Sent: Sunday, December 10, 2006 12:17 AM
      Subject: Re: [Myotubular_Myopathy] Update

      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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