Saturday, January 29, 2011

The Problem with Assumptions

I think I must be the Queen of Assumptions. It is not a crown I wear proudly. This time I think it was a truly innocent/ignorant kind of assumption, but I think it's caused some delays in helping Sumana, none-the-less.

I ASSUMED way back when Sumana came home that a pediatric opthalmologist would address any issues that came up with her vision. I thought (assumed) that instead of taking her to Canandaigua, (like the rest of the family), going to Rochester to a 'specialist' would meet her needs. I guess I was wrong.

Sumana and I went to the Association for the Blind and Visually Impaired (ABVI) to get their doctor's opinion about some visually problems she seems to be having. Within 10 minutes I knew the pediatric ophthalmologist had not done her any favors. (As a disclaimer, she's seen TWO different pediatric eye doctors; it's not that I have a problem with either of them, I just found out that they had us 'barking up the wrong tree').

Within a short time we found out that Sumana's left eye is much stronger than her right eye. The strabismus that showed up in October was, in fact, likely due to increased pressure on the fibers running through the optic nerve. The pressure probably interrupted the innervation between the eye and the brain and 'helped' to 'shut down' her right eye (thus, the wandering began). The good news is that Sumana's double vision is a sign that the right eye hasn't TOTALLY shut down yet. With therapy, it can probably be trained to work properly again.

VISION THERAPY?? Until about a week ago I had never heard of it. Sure, there's physical therapy, speech therapy, mental therapy . . . why not vision therapy? I read an article about a week ago in our state homeschool magazine that addressed many questions I had about Sumana's academic progress. I was convinced that her academic problems are largely due to visually problems. AND, I also started looking into vision therapy computer programs. In addition, a friend of mine mentioned she had heard of another child who had just completed vision therapy. Huh . . .??!!! I guess it is out there, just another option I hadn't heard about.

So, back to the pediatric eye doctors: I have been told Sumana's optic nerve atrophy makes her vision uncorrectable. At the most, she was given a simple eye exercise to try to refocus her eyes when the right one strays. In just a short time, ABVI's doctor recommended a developmental opthalmologist. What? That's another thing I've never heard of! And, get this, he's in CANANDAIGUA!! UGH!!! I've been traipsing to Rochester all these years and the doctor Sumana needed was right near us!! UGH!!!

I know this is all in God's timing, but it is rather frustrating to find this out six years after beginning visual tests. I also know, that the incident in October probably made us more aware of her issues and some possible causes.

Back to the ABVI appointment: We also found out that Sumana has multiple blind spots. These are areas that she literally can't see. She called out letters off an eye chart and skipped the same one over and over. This happened in three different areas with one eye and two times with the other eye. I almost feel guilty for getting frustrated with Sumana when she would skip words in a story she was reading. Huh . . . she couldn't even see them! No wonder I had to completely isolate the word for her to find it.

The ABVI doctor didn't give Sumana a full exam with recommendations, because she felt the developmental eye doctor should be our next step. However, Sumana did experiment with magnifiers and prisms and both helped her see nearly 20/20. (That's amazing, considering her right eye tested at 20/80!) So much for not being correctable! She may not wear a traditional pair of lenses, but there are specialized lenses that will definitely help her. Yea!

So, Tuesday morning we go to meet with the developmental opthalmologist. It will be interesting to see what he recommends. It probably will be some type of vision therapy. We'll just have to wait and 'see'. (ha, ha!)

Also, on Tuesday, Sumana will have her annual (or is it semi-annual?) appointment with her pulmonologist and respiratory therapist. We have not used the cough assist machine in six months. I hope we don't regret it, but I guess it'll be a good test to see if she really still needs it. She is so fed up with PT exercises, eye exercises, OT exercises, etc., etc., that I've let the cough assist slip. (She really is developing a very strong opinion and sees great injustice that no one else has to do all the exercises that she does. Forget the fact that it makes her stronger and healthier . . .I guess that doesn't matter to a tween!)

So, I've learned that I need to ask more questions and if I don't like the answers I get . . . look harder to find someone who might be able to find the best answer for Sumana. There are so many new options available today that Sumana's future is going to be very bright. We just need to get her the correct type of help and encourage her to do her best!


  1. I am glad that you are finally getting some answers.

  2. Praying for strength for you and Sumana that you will be encouraged by God and by those around you that God puts in place. Like you said before,nothing happens to Sumana that didn't have God knowledge and permission first. You have a mother's heart which makes the pain so crushing when you see you girl struggling. Always out here praying.