Therapy

Over the past few months we have been working hard to get Sophia set up with therapists that will help her physical and mental development.  I am pleased to report that Sophia now has a team of therapists that we work with on a regular basis.  Her therapists have all been coordinated with the help of ECI (Early Childhood Intervention), a state agency authorized to support families with children with disabilities or developmental delays.

Sophia has a case worker, who comes on a monthly basis, to help us review her needs and see if they are being met.  If they are not, or if they change in anyway, we are able to work together to bring on additional help.  Her case worker is also her occupational therapist (OT).  She comes twice per month to work with Sophia in this capacity.  Her goal is to help Sophia with her activities of daily living.  Eventually this will be things like brushing her teeth and hair, getting dressed, and doing household tasks.  Right now, we primarily work on sitting, which she detests, and increasing her muscle strength by "helping" her do things like tummy time, lying on her side, and her head & neck control.  During our last visit the OT placed Sophia on a big exercise ball rolling it around to help Sophia strengthen her abdominal muscles.  She was so impressed with Sophia...she didn't cry even once.  Sophia seemed to really enjoy the new experience.

Did you know there was such a thing as a vision teacher?  Well, we didn't, but now we do.  Sophia's vision teacher comes to work with her once a week.  Her goal is to help maximize Sophia's vision and increase her awareness of the environment around her by utilizing all of her senses.  She brings the most wonderful toys for Sophia to play with.  Sometimes Drew is here during therapy time and I think that he sees the vision teacher as a kind of Santa Clause.  The vision teacher brings huge bags of special toys that have flashing lights, vibrate and make all kinds of noises.  This is all so exciting to Drew who can't wait to start pulling out every toy in her bag.  Sophia's favorite toys are the ones that vibrate and play songs, but her ultimate toy is the one that she can also put in her mouth.  Our goals with Sophia right now are for her to reach for a toy that vibrates or makes noises that is placed just out of her reach.

Developmental Specialist.  Yet another new person that we have incorporated into therapy for Sophia.  She comes twice a month to help Sophia through various physical and behavioral therapy techniques.  In her words, she will, "work Sophia out without her ever knowing that she is working out."  For instance, she has Sophia sit up while supporting her from behind by placing her hand behind Sophia's head and the other hand on her shoulder.  This forces Sophia to use her abdominal & oblique muscles to support herself.  She not only teaches Sophia, but also us.  That way we can do our "homework" between visits.

We are so lucky to have these professionals in our lives.  They are so very patient with us and show us the little things that make such a difference in caring for Sophia.  They have also taught us that items that are ok for other babies are not good ideas for Sophia.  For instance, a Bumbo chair...this allows Sophia to be propped when she is sitting and doesn't force her to hold her own weight.  I never thought of it that way.  It is for these reasons and so many more that I look forward to her weekly therapy visits and can't wait to see the positive impact they will have on Sophia's development.

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!!!