The Wizard of Oz

On Thursday, March 31st we took Sophia to see the Neuro-Ophthalmologist at Children's Medical Center in Dallas.  He is the doctor that we have been wanting to see since December when we first learned of Sophia's problems. It took quite a while to get an appointment with him, jumping through all the proverbial hoops, seeing 3 other doctors before he would accept Sophia as a patient.  But now she is in!

I was really dreading this visit, earlier in the day Sophia's vision teacher gave me paperwork that the ophthalmologist filled out and provided to the state of Texas saying that Sophia is legally blind, appears to have no vision and that this is a permanent condition that will most likely not get better.  I knew that she had a severe visual impairment and that her vision will most likely never be normal, but to have it written on an official document made it so very real and concrete.  I guess looking at the bright side of things, it will enable us to get additional services for Sophia - we already have a vision teacher/vision therapist for her, but now she will also be referred to the Texas Division for Assistive & Rehabilitative Services.

Ok, so back to her visit...it started with us providing all the details on my pregnancy & Sophia's medical history.  We discussed all the tests that she has had up to this point and those that we have coming up (we are taking Sophia to Houston in May to see a geneticist, genetic ophthalmologist and a neurologist that has treated some other Aicardi girls).  The doctor went over her MRI, taking time to show us the areas of Sophia's brain that don't quite look normal and that are most likely responsible for her visual problems.  He noted that Sophia's cerebellum is a little too large and that the sulci in her brain are widened.  He also did a full eye exam on Sophia looking at her retinas and assessing her ability to track objects.  All stuff that she has had done before.

However, this time he made some miraculous discoveries.  First, Sophia showed us all that she is able to track a penlight.  He put a penlight in front of her and she watched it move from left to right with the lights in the room both on and off.  She has never done this before.  It was like all of a sudden something in her switched on and she just started tracking it.  She was also able to look at him for a full three seconds without her eyes roving.  Typically Sophia's eyes are constantly moving they never stop to focus on anything, but during this visit they did!  The doctor was so very positive about her new found abilities.  He told us that after looking at her chart and the notes from the other doctors, he thought she would be so much worse than she is.  He also told us that he sees 6 other Aicardi girls and that he does believe that she has Aicardi.  But that none of the girls are exactly the same, they are all different in their own ways.  He was the first doctor to be able to put her neurological and ophthalmological problems together and give us a complete picture. 


Our next visit is in three months.  He plans to see what her visual abilities are, if they have changed for the better or worse, and also to take some pictures of her retinas using a special camera so that he can document the location of her retinal lacunae.  He is also interested to see what the specialists in Houston say about her condition.  I definitely have to say that The Wizard of Oz was not just a little man behind the curtain, but someone who was able to give us some answers to our daughter's very complex problems.

On a side note, I ask that you continue to pray for Sophia.  Please pray for healing, for her brain to grow and her vision to improve, and for her to continue developing into a beautiful healthy little girl.  I truly believe that the Lord is hearing our prayers for her to get better.  Nothing else can explain her miraculous transformation.  From the very bottom of my heart, THANK YOU!!!