Sunday, July 1, 2012

Joey's Eye Surgery - The Mysteries of Nystagmus

And once the storm is over, you won't 
remember how you made it through, how
you managed to survive.  You can't even be
sure, whether the storm is really over.

But one thing is certain.  When you come out of the storm, 
you won't be the same person who walked in.
-Hanki Murakami

Nystagmus is a weird one.  It is a "repetitive, involuntary movement of the eyeballs, usually involving both eyes" according to my copy of Babies with Down Syndrome: A New Parents' Guide.  It can cause problems with eyesight and in Joey's case, it is also causing optical torticollis.  Optical torticollis means that he tilts his head back to try and steady his eyes from jumping side to side. 

Below are some photos of how Joey tilts his head back about 99% of the time instead of looking at things straight on. 

His eye doctor decided to wait awhile to see if his head tilt would get better and so we've been watching him for about a year now.  After our last visit about a month ago, his eye doctor decided that now is the time to try surgery to help correct Joey's head tilt and to help calm his eyes.  

Will this help him learn to crawl on all fours?  We hope so.  Will this help him be able to stand better?  Maybe.  Will this help his gross and fine motor skills and development.  We really hope so.  The doctor believes there is about a 75% chance of success.

Initially they were going to cut and re-attach four muscles on each eye for a total of 8 muscles.  As of a week ago they were going to start with two muscles on each eye and then do the other two in a couple of months during a separate surgery.  We will find out for sure tomorrow.

This will be the fourth time in the past year that Joey has undergone anesthesia.  The first was at the University of Michigan for his heart surgery.  The second was at University Hospital for his ear tubes.  The third was at Akron Children's for his auditory brain stem response testing and now the fourth procedure will be a the Cleveland Clinic.

I wish I could say it gets easier.  It doesn't.  Each time it gets harder because he is getting older and more aware.  Each time we hand him over to strangers in medical masks I worry and my stomach rolls into knots.  With each procedure Tommy is older and there are more questions to answer from him.

At the end of the day we are doing what we have to do to help Joey be his best self.  Unfortunately, that doesn't usually make it any easier.  

I tried to take some videos to look at his eyes pre-surgery so we have something to compare them to afterwards.  The reason he is in the high chair in the videos is if he is on the ground he is in motion.  His army crawling has taken on a new level of speed!

If you think about it today-- please say a little prayer for Super Joe that his operation is as pain-free and uneventful as possible.  We thank you so very much.


  1. Will be thinking of you guys and hoping that it all goes smoothly and successfully.

  2. Prayers to you all. Kate has been under 3 times well so I totally understand where you are coming from. I am sure he will do great!

  3. I hope the eye surgery is successful! I hate the anesthesia too. Claire will get her 4th dose this fall, for her second set of ear tubes. :(

  4. Hope everything went well! We've done the anethesia twice and it definitely doesn't get any easier!


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