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[Families of Angelman Syndrome] Re: New Member, Many Questions

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  • Laurie
    Hi Christine, It sounds like you and your family have been through quite a lot in the last year. Sending you more big ((Hugs))! Which test are they doing on
    Message 1 of 2 , Jul 14, 2006
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      Hi Christine,
      It sounds like you and your family have been through quite a lot in
      the last year. Sending you more big ((Hugs))! Which test are they
      doing on your little one? Are they doing the FISH test or a
      methylation? Just curious.

      Knock on wood, we have been very lucky with Josh. So far he has not
      had any seizures, he sleeps very well, and while behind, he seems to
      be catching on to his milestones.

      There is a listserv. through UC San Diego where there are a lot of
      families with AS conversing. You might check the Angelman Syndrome
      Foundation Website as well.

      Let me know if there is anything I can do for you. If you just want
      to chat or vent or anything! It is so hard when there is something
      wrong with your precious little one. It's been a shock to our family
      and we are slowly coming out of the fog. It's amazing the wonderful
      dispostion these little ones have, and how one little look and smile
      can melt your heart in just one fraction of a second.

      Take Care,
      Laurie

      --- In familiesofangelmansyndrome@yahoogroups.com,
      hulachrisinga01@... wrote:
      >
      > Emma has already started having seizures at about four weeks of
      age so we
      > have already done the EEG, as a matter of fact they did a five day
      EEG with
      > video monitoring! She is so delayed. She is just learning at a
      year to roll
      > over so we are getting PT, OT, and Speech already. She also has
      a brain
      > malformation called agenesis of the corpus collosum. She has a
      cyst on her brain
      > as well so we do MRI's every three months. I feel as if I have
      been drugged
      > and cant wake up. I dont remember much of the last year of my
      life. But
      > everytime I look at her my heart melts. She always has a smile
      for me.
      > Thanks for you help and support.
      > Christine
      >
      >
      > [Non-text portions of this message have been removed]
      >
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