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2181RE: [Myotubular_Myopathy] update on regan and marconi

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  • Wendy
    Nov 1, 2005
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      Hi Rachel

      So pleased to hear how well Marconi is doing – well done him!!

      Poor little Regan, we are sorry that he has broken his arm.  Zak has had 2 operations now and has been absolutely fine with general anaesthetics both times, despite my worry.  Providing you are with a good, reputable hospital with PCU unit, he should be in good hands.  I would just check with them that they are aware of the complications of anaethetics with MTM and mention the risks.  I think I may have sent you a paper on anesthetics (with the big pile of information on MTM), so it might we worthwhile you photocopying that and giving it to his surgeon.  I’m sure it has probably been updated now – but it will hopefully register with them and give you some peace of mind.  I hope everything goes okay and will be thinking of little Regan.

      Take care, love Wendy and Zak.


      -----Original Message-----
      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
      01 November 2005 09:45
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] update on regan and marconi


      marconi has fully recovered now he had is rsv in jection last week so
      he shouldnt get ill over the winter period
      his phyiso came yesterday she said hes doing good hes trying to hold
      his head on his own he can do it for 18 secounds so im so proud of him

      as for regan hes broke his arm jordan jumped on him and landed on his
      arm whats scarey is the doctors said he might need his bone pushing
      back in place which i think he might need to be put to sleep for
      marconis physio said she would ring through and let the doctor know of
      the dangers and putting him to sleep i hope this dosent happen she
      also said if there did put him to sleep there was going to do the
      muscle biopsy at the same time
      we still havent heard anything from the dna place its been ages there
      sent his blood of in may this year
      hope everyones ok

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