Thursday, February 20, 2014

Jacob and I are home. We returned to Tallahassee around 7:00 pm last night.  Waking at 5:00 am to clean the room,driving from Orlando to Gainesville, spending four hours in eye clinic, grabbing a quick lunch and then spending another four hours at the Oculist makes for a long day.


I'm headed to Leon to see my beautiful Brie dance in the Black History Month assembly, so this will be short :).  Eye clinic with our neuro ophthalmologist, Dr. HazemSamy, is always worth the wait, no matter how dreadful it seems at the time. In the first few hours of our clinic time,Jacob had a vision screening, had photos taken of his optic nerve and completed his Goldman's fielding vision test.  All of this activity is done to monitor his left, and only, eye. The good news is that the nerve fibers on the photo haven't changed since both January and August of 2013 and the field of vision tests are the same.  The bad news is Jacob has suffered some vision loss since August.Since his decompression in 2009, his vision has changed from 20/50 in 2011 to 20/60 in 2012 and to 20/70 in 2013. Yesterday, it was 20/80 with no changes in appearance.Dr. Samy had Jacob redo his vision test with him and gave Jacob a long time to "scan and find" the letters.There were a few letters that Jacob read at 20/70, so that was promisingJacob says he can see the letters but then loses them. Itpossible that the combination of the loss of his right balance nerve and the vestibular schwannomaon the left are affecting his vision.  Dr. Samy wants Jacob to return in four months to retake the tests and if there are any other changes, he will order an MRI at Shands of the orbit area. The fear is that when optic nerve tumors likethe ones Jacob has start to change, the vision is what changes first, before the other tests pick up the changes.  So we wait.


We also talked about radiation at the University of Pittsburgh if the tumor starts to change. Dr. Samy said he’s sent two patients to Shands UF in Jacksonville for proton radiation with stable results (so far), but he isn't as confident in it as he’d like to be yet. Hoping he will be by the time Jacob needs it, if in fact he does. I continue topray that Jacob never needs it!


The appointment at Guzman's Ocular went well.  They created a mold for a new prosthetic and started some of the lens coloring.  She worked on it for the entirety of the four hours we were there. It's a very impressive and laborious process. We will go back for more art work in a few weeks.


That's all for now.


Thank you all for your prayers and support. I'm trying to keep my head above water as I'm feeling less optimistic.My two hours of sobbing on the way home last night(while Jacob slept) may have helped slightly. I'm sure a few days back at home, prayer and a lot of love will make it easier to be ready to face what's next.


1 comment:

  1. Love you Tammy -- I know it takes extra energy to keep us informed, and we appreciate it .... <3 <3 <3