Tuesday, February 8, 2011

Septo Optic Dysplasia and All that Jazz

Matthew is unlike any other little boy I have ever met. 

His eyes are a deeper brown.
His lashes are a mile long.
His smile melts hearts.

There are also other differences.

His medical history is long and in depth.  I want the world to know just how special our children are, so I thought once a week I would share one of his diagnoses with you, dear blogger friends. 

Matthew's list of diagnoses is long.  It is hard to pronounce.  Its scary to hear.  It in no way describes him. 

For this week, I want to explain Septo Optic Dysplasia. 

Generally speaking, this is a disorder of early brain development.  It is characterized by the absence of the Septum Pellucidum which is a thin membrane located at the mid line of the brain  Septo Optic Dysplasia or, SOD, is a spectrum disorder meaning there are varying degrees of severity.  Matthew has a very severe form, partially due to many other diagnoses. 

SOD is a vision condition as well as a neurological condition.  The vision condition is called Optic Nerve Hypoplasia, or ONH.  Matthew was born without the optic nerve growing.  If the optic nerve did not grow, messages cannot be sent to the brain.  In normal development, the eye receives light from the outside world and sends this information to the brain using the optic nerves as a "road" so to speak.  When ONH is present there are not as many connections from each eye to the brain, therefore, poorer vision.  Matthew is legally blind.  He sees light and shadow.  He can tell if someone is in the room.  He can see about two feet in front of him.  For now, that is all we know about his vision.  With the help of vision therapy and a mean mommy that makes him work, Matthew's vision is constantly improving.  We use light boxes as well as a "little room" to encourage his vision learning.   

Along with SOD and ONH, Matthew has Nystagmus.  Nystagmus is involuntary eye movement.  Matthew's eyes "jump" all the time.  When he focuses on something it takes a while and does not last too long.  

SOD can also cause many endocrine issues.  As of now, Matthew does not seem to have any hormone deficiencies.  This is a condition that could rear its ugly head at any time, so we see an Endocrinologist once a year. 

For more information on SOD or ONH Magic Foundation and Focus Families have great information as well as resources.

We decided the day Matthew came home that we would not allow a label to be a defining description of our children.  It is sometimes hard for a person to see our children as anything other than the diagnoses on a sheet of paper.  We see them for the beautiful blessings they are.



4 comments:

  1. brandi, yall are great parents with wonderful kiddos. it is a great thing that yall dont let the medical issues define who they are. they are kids just like all the others. it is who they are that makes them special. not what they have or diagnosed with

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  2. I love that last picture!! What a precious boy he is!

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  3. Hi Brandi, I'm newer to your blog and just learning about your beautiful children. As soon as I saw this post I knew I wanted to introduce you to a friend of mine. Her beautiful daughter Meggie has the same diagnosis. You can find her blog at http://wendyeckwielen-specialneedsmom.blogspot.com/. I love that last picture of you and Matthew!

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  4. Such a beautiful picture, love that big smile. Junior has those same great big open mouth smiles.
    I have an adaptions blog and am currently doing a series of posts on sensory spaces/little rooms. Would you possibly be willing to share about Matthews little room.
    http://adaptions4kidz.blogspot.com
    hjoythom@yahoo.com

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