Griffin's Eye Journey

Last April 2012 we noticed that Griffin was having a hard time seeing up close. He would sit really close to the TV or hold a book really close to his face. We assumed it wasn't a big deal, but thought it would be best to have him checked out by the ENT, Dr. Simon.

We visited with Dr. Simon and he thought that Griffin would probably need glasses, but he wanted to refer us to a pediatric opthamalogist, Dr. Roberts

So in May 2012 we got an appointment with her and went in for a visit. The appointment was long and after several hours of playing sight games, dialating his eyes and doing multiple tests we were given the diagnosis of ambliopia and strabmisis with a crowded optic nerve. I was shocked, Griffin was only two years old. How could he have so many problems with his eyes.

Dr. Roberts wrote us a prescription for Griffin's first pair of glasses. His prescription was ___. We made our first trip to Lens Crafters and ordered his glasses.

 Trying on his glasses for the first time

 Our first picture with glasses

Right away we were referred to a pediatric neuro-opthamalogist. Everything was happening so fast and I wasn't ready to accept any of it. I blamed myself. I wondered what I could have done differently during my pregnancy to prevent Griffin from having bad eye sight. I didn't want my child to be different. I didn't want him to wear glasses. What would the other kids say? Would he get teased? I just wasn't ready to accept this was happening.

Finally, we met with Dr. Buckley, the pediatric neuro-opthamalogist at Duke. We've been seeing him ever since. The first appointment with him was another long one. We were shuffled from room to room doing more vision tests, games and dialating his eyes again. He confirmed our fears that Griffin's eye sight was bad. His left eye was worse than his right. He was seeing 20/50 right and 20/150 left and 20/200 is blind. Basically, Griffin's brain was seeing two different images out of each eye so his brain shut off the vision to his left eye and he was only using his right eye to see. In addition, his optic nerve was crowded. He could have been born this way, but Dr. Buckley wasn't sure. The first way to determine if it's the nerve or eye is patching. If the patch helps improve his vision in the left eye then it's not optic nerve. If it doesn't help then it is the nerve and there is no cure for that. We were told that it could limit his depth perception and certain activities.

Now, in addition to wearing glasses, Griffin has to patch his right eye 6-8 hours a day. We started with sticky patches and tried to draw pictures on them, but he wasn't a fan. I finally found a place that made cloth patches so we ordered one with a train. Griffin did great with the patch and wore it everyday. I was really nervous about him wearing it to school, but all of the kids thought it was cool to have a train on his eye.

Our first patch - a sticky patch with a car drawn on it

 At our next visit with Dr. Buckley we found out that the patching was working. Griffin's eyesight in his left eye was improving because he was being forced to use that eye. We were both very excited that this treatment was working. Our homework was to continue patching and see if the eyesight continued to improve. Over the course of several months the left eye improved.

During our visit in March 2013, Dr. Buckley felt like it was time to move to the next course of action - Surgery. He treatment plan was to cut the muscles and reposition them in both eyes. The new position of his eyes should help his brain focus on one image out of both eyes. Of course we were very anxious about this procedure. Griffin was only 3 years old and they are operating on his eyes. 

In April we went in for the surgery. Dr. Buckley and his team did a nice job and the surgery was relatively quick - about 2 hours from start to finish. The recovery process was another story. It was horrible. Griffin was uncomfortable and in a lot of pain. He had stitches in both eyes and he wasn't suppose to touch them. Plus, we weren't suppose to get any water or debris in them either. Not easy rules for a 3 year old. He cried a lot, we snuggled a lot, ate lots of treats and made the best of it.

 Snuggles before surgery 

 Happy boy before surgery despite not being able to eat or drink

 Suiting up to go back into surgery. Mom was able to stay with him until he fell asleep

After surgery - a very tired boy who didn't feel well

That was until Griffin passed out in the car one night a few days after surgery. Scott tried to wake him up and he wouldn't move. Scott called me right away and we decided to take him straight to the emergency room at Duke. The ER docs were so nice and evaluated him for seizures and heart rhythmia. Everything checked out ok, we got a good report and went home to rest.

Other than that scare, he did well. The post op appointment went well and we were told to come back in 6 weeks for a full evaluation to determine if the surgery eliminated all of the problems. His eyesight had improved and was now 20/40 in the left eye with glasses, but he still needed help. Dr. Buckley decided that increasing his glasses prescription was the best move for now. His new prescription for his right eye was +3.25. and +4.25 for left eye. We would determine if that helped or if another surgery was needed. 

 At the Duke ER, having tests done

 Our visit on September 12, 2013 ruled out surgery for now. Griffin's vision had improved slightly since his last visit and his eyesight was now 20/25 in his left eye with glasses. This appointment confirmed what we already knew - Griffin's depth perception is not functioning because his eyes were crossed and there are no exercises to improve it. Dr. Buckley told us that his eyes have to be optically straight and then the brain has a 50% chance to regain function of depth perception. Scott and I are hoping and praying that he will regain this function so he can catch a ball and play sports in the future. Our diagnosis for this visit is to add prisms to his glasses. The doctor thought that the prisms would help bend the light and make the eye see straight, which would help the eyes align. If this works, then we wouldn't need surgery again to move the muscles. Glasses come in on September 25 and we go back for a follow up in December.