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2187Re: [Myotubular_Myopathy] update on regan and marconi

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  • kristin cypher
    Nov 1 1:47 PM
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      Hi Rachel:
      I am so, so sorry to hear that Regan broke his arm!  I agree with Wendy that he should be okay under general anesthesia, as long as the person administering the anesthesia understands the risks associated with MTM.  Sebi (my 2 1/2 year old son with MTM) has had several operations that required anesthesia, and each time they used a much 'weaker' dose than normal, and Sebi did great.

      rachel_wrigley <rachel_wrigley@...> wrote:
      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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