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.
--- In Myotubular_Myopathy@yahoogroups.com
, connie guinn
> 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.
> --- 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
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