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5298Re: [Myotubular_Myopathy] regan and marconi still ill

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  • debbie mccluskey
    Nov 1, 2007
           I understand exactly where you are coming from.  I asked my husband if he thought I would  stop crying.(crying is good thearpy)  He never cries in front of me but I am sure that he does on the inside.  I slept in a lawn chair recliner (could not afford a real one) many nights with my babies on my chest just to keep them upright so they could breath. Nobody understands what we go through but now that I know what is wrong because our docs kept saying it did not affect their respiatory system I feel like their is a light at the end of the tunnel.  I will pray for the boys and you.  Hang in there you are not alone I understand.

      rachel_wrigley <rachel_wrigley@...> wrote:
      hiya all both boys are still ill we seem to think its viral infection
      and not baterial marconi seem to be doing good apart from him having
      a secreations in his thoat he seems to cough like mad in a morning
      any adeas on how to lay him i seem to think cause hes laid flat this
      isnt helping him?i even tried propping him up on 2 pillars but he
      just slid down the bed hes growing out of his cot now we not sure
      what to buy him now as a bed would be too big plus he would fall out

      regan isnt too bad hes just got the same thing as marconi his meeting
      went ok with the school we told then he requires 1:1 care while in
      school they have accepted this and think there going to more felxible
      when it comes to our needs being understud
      i havent been out of the house all week as i didnt want to take the
      kids out (looking forward to my driving lesson tonight )gives me a
      hour rest

      key worker came yesterday she wasnt much help?all kept on about was
      why marconi was in his play pen as though he in there all the time i
      had to put her straight and say hes ill the last thing he wants his
      to walk about and fall over u invite ppl into your home and when u
      do there seem to judge us !!!
      and she says oh you could do with more space in the house cheecky cow
      i told her i only moved here 2 yrs ago and that was for the children
      to make life better for then these ppl just dont have a clue

      its like the physios and ots and everybody else dont seem to come for
      then when there phone to see how the boys are there ask us are we
      doing everything for them i just say well if we had all the quipment
      we needed for the boys we would be able to manage more

      i dont think there understand what its like to be a parent of a
      disabled child i find it so stressfull at times and many of nights
      ive sat and cried and thought WHY arent we getting more help then
      this its like when i tell my sister how things are she just says i
      undertstand lovebut how can she possible understand she not in our
      situation weve never been offered coucelling or anything

      im sorry for the rant jusr needed to get it off my chest
      take care evryone and ill update more later
      thanks for reading

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