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Re: [Myotubular_Myopathy] Jacob's eye surgery

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  • redscootee@webtv.net
    Amanda, Prayers and hugs coming your way for Jacob s upcoming surgery. I can imagine how scary the upcoming surgery is. My dad is legally blind and anything to
    Message 1 of 4 , Aug 1, 2004
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      Amanda,
      Prayers and hugs coming your way for Jacob's upcoming surgery.
      I can imagine how scary the upcoming surgery is. My dad is legally blind
      and anything to do with the eyes scares me too.
      Does anyone get where there vision fades in and out or there is a black
      spot appears and then things come back into focus but not real clear? I
      get this from time to time but cannot quite pinpoint if it is connected
      with certain events yet.
      take care pat
    • connie guinn
      Amanda, Sorry to hear about Jacob needing the eye surgery - that is very scary :( What is the other procedure if the contact lens doesn t work? (Just
      Message 2 of 4 , Aug 11, 2004
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        Amanda,
        Sorry to hear about Jacob needing the eye surgery - that is very scary :(
        What is the other procedure if the contact lens doesn't work?  (Just curious.)  I think that you will be able to keep his eye hydrated/ lubricated enough for the contact to work- I mean, you  are an excellent mommy and care provider.  If anyone can do this, you can!!  I will remember you in my prayers. 
        Other than the eyes, is everything going ok?  I am so glad that you get along with the nurse so well- that is such a blessing!!   Are you still with PSA?   One question if you are:  Does PSA know that you have a 'non- work' relationship with the nurse?   LOL   Talk to you soon.
         
        -Connie

        Amanda <dhahjh@...> wrote:
        Jacob will be having eye surgery on August 27.  He had an
        appointment this past Wednesday with a ped opthalmologist who
        specializes in cataracts.  She said that she is almost certain that
        Jacob can't see at all with his right eye.  However, Jacob is not a
        candidate for routine lens replacement - the typical procedure for
        cataracts, because of his subluxated lens.  Basically, he has no
        structural support for his lens.  So, they will remove the lens from
        his right eye and he will have to wear a contact lens in that eye -
        yes, a contact that we will have to put in and take out everyday. 
        The reason he can't just wear his glasses is because his left eye
        will continue to be extremely nearsighted and, after the surgery,
        his right eye will become extremely farsighted.  She said that is
        too much on his brain for glasses to correct.  So, as you all
        probably know, most mtm boys have dry eyes from lack of blinking. 
        If we aren't able to keep his right eye moist enough or if he just
        can't tolerate the contact, there is another procedure that can be
        done.  It is not something they prefer to do on children, but it may
        become the only option to save Jacob's vision. 

        As you can imagine, this is very scary for me.  Jacob's vision is
        one thing he does have and it is very important.  Please pray that
        all goes well!

        Take care,
        Amanda




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