Loading ...
Sorry, an error occurred while loading the content.
 

Re: [Myotubular_Myopathy] Updates and more-Amanda

Expand Messages
  • connie guinn
    Amanda, John Scoggin has the problem with the sublexed lenses. He recently underwent the surgery- one on each eye. I am not positive, but I believe that Pam
    Message 1 of 4 , Jul 13, 2004
      Amanda,
      John Scoggin has the problem with the sublexed lenses.
      He recently underwent the surgery- one on each eye.
      I am not positive, but I believe that Pam said that
      the results were not as good as they had hoped for.
      You might want to give her a call and talk to her
      about that.
      -Connie
      --- Amanda <dhahjh@...> wrote:
      > Shannon, It is good to hear from you. I am so sorry
      > that things are
      > still not better for Javad. You must be so tired.
      > I wish there was
      > someway I could zap across country to help you out.
      > I will continue
      > to send lots of prayers and thoughts your way!!
      >
      > Marva, It is so good to hear from you that Briar is
      > doing well. I
      > was just thinking of him the other day. Thanks for
      > the update!
      >
      > To everyone else - I hope you are all doing well and
      > the boys are,
      > too!
      >
      > Jacob is doing great. He had his 3-month check
      > yesterday for his
      > cataracts. Not good news! The right side is
      > increasingly getting
      > worse so he will need lens replacement surgery. The
      > dr. also said
      > that he has sublexed lenses, which means instead of
      > being centered,
      > his lenses are migrating inward. Do any of your
      > boys have this
      > problem? It would be interesting to know whether it
      > is mtm related
      > or just a Jacob-thing :-). So, we will be traveling
      > to Miami next
      > month to have him examined by another
      > opthlamologist. Our local
      > opthlamogist doesn't feel comfortable doing the
      > surgery because of
      > his condition. However, when his pulmonologist
      > comes back from
      > vacation I am going to try to get him to reassure
      > the opthlamologist
      > that Jacob will do just fine at our local hospital.
      > We are much
      > more comfortable there and they all know him. It
      > would just be so
      > much easier on us, as Miami is 2 1/2 hours away.
      >
      > We got to have our 2nd ambulance ride about 2 weeks
      > ago. Jacob
      > decided that it has been too long since he visited
      > his friends at
      > the hospital, so he kept a fever for 24 hours and I
      > couldn't do
      > anything for it. His lungs were clear; he was
      > breathing fine.
      > However, he began acting very strangely, so I called
      > 911 and we took
      > a ride. Just as we got there, his fever broke and
      > he has been fine
      > since. We came home that night after his x-ray,
      > cbc, rsv all came
      > back negative. I told him that next time he wants
      > to visit his
      > friends to just let me know. Several members of the
      > respiratory
      > team came down to the ER to visit Jacob and he was
      > very excited.
      >
      > I guess that is all. I am praying for all of the
      > boys who are not
      > doing well and I hope they are better soon.
      >
      > Lots of Hugs to everyone!!
      >
      > Amanda
      >
      >




      __________________________________
      Do you Yahoo!?
      Yahoo! Mail is new and improved - Check it out!
      http://promotions.yahoo.com/new_mail
    • Amanda
      Connie, Thanks for that information about John. Yeah, it doesn t sound like it is a very easy thing to repair. I will e-mail you privately to get Pam s
      Message 2 of 4 , Jul 19, 2004
        Connie, Thanks for that information about John. Yeah, it doesn't
        sound like it is a very easy thing to repair. I will e-mail you
        privately to get Pam's number.

        On the other hand, our insurance won't pay for Jacob's visit to
        Miami, so we are going to Tampa instead. I am happy about that
        because it is a little closer. He goes next week for an initial
        appointment then we will probably have to go back the following week
        for the surgery on his right eye. I will post an update.

        Amanda


        --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
        <kookla_g@y...> wrote:
        >
        > Amanda,
        > John Scoggin has the problem with the sublexed lenses.
        > He recently underwent the surgery- one on each eye.
        > I am not positive, but I believe that Pam said that
        > the results were not as good as they had hoped for.
        > You might want to give her a call and talk to her
        > about that.
        > -Connie
        > --- Amanda <dhahjh@y...> wrote:
        > > Shannon, It is good to hear from you. I am so sorry
        > > that things are
        > > still not better for Javad. You must be so tired.
        > > I wish there was
        > > someway I could zap across country to help you out.
        > > I will continue
        > > to send lots of prayers and thoughts your way!!
        > >
        > > Marva, It is so good to hear from you that Briar is
        > > doing well. I
        > > was just thinking of him the other day. Thanks for
        > > the update!
        > >
        > > To everyone else - I hope you are all doing well and
        > > the boys are,
        > > too!
        > >
        > > Jacob is doing great. He had his 3-month check
        > > yesterday for his
        > > cataracts. Not good news! The right side is
        > > increasingly getting
        > > worse so he will need lens replacement surgery. The
        > > dr. also said
        > > that he has sublexed lenses, which means instead of
        > > being centered,
        > > his lenses are migrating inward. Do any of your
        > > boys have this
        > > problem? It would be interesting to know whether it
        > > is mtm related
        > > or just a Jacob-thing :-). So, we will be traveling
        > > to Miami next
        > > month to have him examined by another
        > > opthlamologist. Our local
        > > opthlamogist doesn't feel comfortable doing the
        > > surgery because of
        > > his condition. However, when his pulmonologist
        > > comes back from
        > > vacation I am going to try to get him to reassure
        > > the opthlamologist
        > > that Jacob will do just fine at our local hospital.
        > > We are much
        > > more comfortable there and they all know him. It
        > > would just be so
        > > much easier on us, as Miami is 2 1/2 hours away.
        > >
        > > We got to have our 2nd ambulance ride about 2 weeks
        > > ago. Jacob
        > > decided that it has been too long since he visited
        > > his friends at
        > > the hospital, so he kept a fever for 24 hours and I
        > > couldn't do
        > > anything for it. His lungs were clear; he was
        > > breathing fine.
        > > However, he began acting very strangely, so I called
        > > 911 and we took
        > > a ride. Just as we got there, his fever broke and
        > > he has been fine
        > > since. We came home that night after his x-ray,
        > > cbc, rsv all came
        > > back negative. I told him that next time he wants
        > > to visit his
        > > friends to just let me know. Several members of the
        > > respiratory
        > > team came down to the ER to visit Jacob and he was
        > > very excited.
        > >
        > > I guess that is all. I am praying for all of the
        > > boys who are not
        > > doing well and I hope they are better soon.
        > >
        > > Lots of Hugs to everyone!!
        > >
        > > Amanda
        > >
        > >
        >
        >
        >
        >
        > __________________________________
        > Do you Yahoo!?
        > Yahoo! Mail is new and improved - Check it out!
        > http://promotions.yahoo.com/new_mail
      Your message has been successfully submitted and would be delivered to recipients shortly.