Avery Update

 

   We had a few appointments in October with her and I realized, I didn’t do an update…so here it is. 

First, her seizures are under control.  But she is on two meds for that.  The goal is to wean her off the one so that she is only on one.  They took some blood so take measurements of the medication to make sure as they taper down on the one, she doesn’t have any seizures as a result. 

Second, her eyesight.  This is not so cut and dry in the results.  Her field of vision (peripheral vision) is MUCH better than when they did the test before.  I was expecting this, because she could barely see anything at the time.  But her right side still is almost nil with peripheral vision.  They also did a test where they measure the width of the optic nerve.  This was interesting.  They had also done this test before her surgery.  On the left, she had further damage.  Which told us she needed that surgery, otherwise she probably would have been blind in that eye.  She most likely won’t get any more, or much back in that eye.  Nerves usually don’t repair themselves.  This damage they think was due to lack of blood.  On the right, however, there was improvement!  Meaning the damage on that side was probably due to compression from the tumor.  It gives us hope that as her brain heals she could get back more vision in that eye and at least as much field of vision as her left.  It could take from six months to a year to know what’s permanent. 

   Also her MRI is Dec. 7th.  Then we meet with her doctors.  Hopefully the tumors are the same, or there is a possibility that they shrunk!  And we will also get (hopefully) the go ahead for her to go back to some or all regular activities.  She has WAY too much energy.  I know, I know, it is a good problem to have with a kid that had BRAIN surgery a few months ago!!  But still a problem.