"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, September 28, 2010

September 28, 2010

I wanted to give a quick update. We called Neurology and Opthamology this morning because we were convinced last night that Benjamin was going blind. Opthamology wanted to see him today at Mass Eye and Ear at 1:00. After we scheduled the Optho appt., we heard back from Neurology and they wanted to see him immediately. I don't know if they thought he may have had a seizure, but they suggested we call an ambulance to take him into Children's. We decided to do that thinking it would get us in quicker, and the EMTs told us we had to go to South Shore Hospital first for an evaluation. The doctors at South Shore said Benjamin's pupils were actually responding to light, but it took awhile. We tried to get him to track and he eventually did that as well. They called the Neurology team at Children's, and they all thought it was more pressing for Benjamin to see his opthamologist. We left South Shore and drove him to Mass Eye and Ear where Dr. M was working.

Our wonderful opthamologist, who has been examining Benjamin's eyes since birth, said he's pleased with the structure of his eyes, but he is concerned about CVI and it's something we won't be able to know until later. Again, we have to wait and see. He does seem to think the problem could be the neurological meds Benjamin's on. We'll be discussing this with Neurology. I have reservations about he meds anyway. I would like to see how Benjamin does without them now that he's in a different environment, but unfortunately they're meds that have to be weaned. Anyway, Dr. M advised us to contact the Perkins School for the Blind because he feels Benjamin could benefit from the infant/toddler program they have. I'll be calling them tomorrow!

The first two years of life are critical as far as brain development goes. I'm determined to do as much as I can, and take advantage of the great resources (such as the Perkins School) that are available to us.


  1. Our prayers continue to be with you! May God continue to bless you with strength, courage, peace, and wisdom. Classical music may help calm Benjamin and will surely help his brain development. Also, check out http://www.14studies.org/


    Cheryl Hess

  2. I know I've said this before but Benjamin is truly blessed to have parents like you. You are amazing advocates for him and I know he just loves you to pieces!! You guys are always in our thoughts!! Sending lots of love