Those Baby Blues. . .

Today we had an appointment with our pediatric ophthalmologists, otherwise known as the eye doctor.  He is extremely familiar with Duane Syndrome and has published several articles and done many studies.  While in the medical world and from the intellectual side of things that is wonderful, there is the other side I like just as much.  His personality and mannerisms with me and my child.  He is intently staring into my child baby blues while singing, clicking, waving a toy to make them move in every direction.  It is entertaining and fascinating all at once.  After a couple of minutes of this he sits back and tells me how wonderful he looks.  The doctor explained that he looks the best he has yet since being seen by him.  His eyes have found their natural alignment in the center, which means that middle muscle has relaxes as it was suppose too to allow the eyes to look straight when he is looking straight.  In the world of Duane Syndrome that is the best that it gets!!  If the eyes are not lined up properly then surgery is usually an option to try to line them up.  This is extremely risky as with Duane Syndrome there is no way of knowing how the nerves are wired.  So, cutting the muscle in a certain area may cause a dramatic opposite reaction than expected, which then leads to possibility of multiple surgeries in an effort to fix it.  We don't know how the nerves are wired in his eyes.

I was excited to hear how excited he was at the progress that his eyes had made on their own with no intervention.  God is amazing!!  I then proceed down my list of questions that I had brought with me and he smiled and went through each one with me.  Each one was a positive and reassuring response with information and knowledge to back them up.  If he didn't know, he would say so and that was appreciated as well.  While there is no cure for Duane Syndrome and his eyes will never turn outward towards his ear, his eyes and his brain have been working together since birth to compensate.  He also said that most children born with this condition do not suffer from double vision because the brain figures out how to shut down the eye that isn't working properly to prevent it.  The goal is to have binocular vision most of the time.

Thomas has figured out the best position for him is with his head tilted to the right.  The doctor explained that its important for people with Duanes to find that place that allows them to see more clearly.  That is his spot!  He said the head tilt is no more dramatic than any other person as he points out how I am tilting my head listening to him.  He also explained how he is not as hindered as most would think.  If someone calls your name and you turn to look at them, you don't turn your eyes to them.  You naturally turn your head to look at them.  So it many ways, he is still going to react normal or look like he is when he is compensating.  We discussed the impact of the neck fusion and he assured me that this too would be something that would not hinder him enough to make a dramatic difference.  He also stated that he didn't see any reason why he would have any neck or back pain at this point.

He then dilated his eyes and we waited to be seen again.  As soon as he shined the light through the lens into my child's eye he stated how beautiful they were.  A couple more steps and he stated "no glasses".  What a relief!!  The nerves in his eyes look strong and healthy and everything is functioning properly.  We discussed a couple of more things, updated his medical information, mentioned the possible syndrome and he said as far as his eyes were concerned he was doing wonderful.  We go back in six months for monitoring.

My little boy is so beautiful in so many ways from the silky feel of his hair, those deep blue eyes when they are staring intensely or even his smile that uses every muscle in his face.  He knows nothing different than this and he is so happy and enjoys so much!!  While I worry and stress about the unknown factors, the appointments, etc., it all melts away in the moments that I am near him.  Tonight I had a  Christmas dinner with some great friends at the church and it was so wonderful to sit like a lady, enjoy a meal with great conversation and then a musical concert after wards.  I was completely swept away and it was the closest thing to getting a break from it all in quite a while.  But as I sit here my highlight was when I went and got my three smiling boys to take them home.  Thomas looked up at me and squealed with his whole body going tense.  He then jumped up my arms practically on my face and took both of his little hands and squeezed me.  I then proceeded to get three to four more squeezes from him as we proceeded out to the car.  Never doubt that his love is immense!!     He is happy, he is strong, and he will overcome any challenges he may face.  And I, his mommy, will always be right there behind him being his loudest and biggest cheerleader.

Many things have happened to me and around me in my life.  Things that are painful, embarrassing, ugly and tragic, but all of them have prepared me and led me to this place.  I would have never become the woman that I am today if it weren't for the journey that I have been on.  While we can never see clearly how the end is going to look like, we should always have faith that in the end God will prevail and his will shall be done.  Many feelings, thoughts and emotions are provoked in me as I heal from things and move past them to focus on my steps now.  I know alone I am not strong enough, but with God anything is possible.  You can be strong enough too, if you allow him in.  Today was a good day.  It was long, it was ran on little sleep, but I feel lifted.

Thomas with his eyes dilated today