Vision Update

Lots of people these days have been asking how Hope’s vision is coming along. Well, the news isn’t as good as we were hoping for. It seems the glasses have only helped ever so slightly, and haven’t done much at all to restore her eyesight as we were originally thinking. I found another opthamologist, and went in for a second opinion yesterday. He strongly feels that Hope is not a victim of shaken baby syndrome at all. He said that because all of her other tests came out negative, like the brain scan, and all that, that she definately is not a victim of abuse. It is really relieving to hear that, as the thought of her going through some sort of abuse makes us absolutely sick. He said that by looking at her, he thinks that she has Retinopathy of Prematurity, which is a condition that some premature babies get if they are born before 31 weeks. He said that her physical features look like she is a preemie, especially her face shape and her long fingers. Her occupational therapist said the same thing last week, and it seems right. We are going in next Friday for a detailed exam, and he will be able to tell us with more certainty if she has it or not. I think I am also going to ask for genetic testing to see if she has something called FEVR, which is a genetic eye disease that exhibits the same symptoms as Retinopathy of Prematurity. I will post what we find next week! It was so nice to find this new doctor. He took alot of time with us, and didnt make me feel intimidated or rushed at all. He was very compassionate, and had a gentle way with Hope, and we were able to get an ultrasound of her eye, which we couldnt do at our last doctor because Hope was screaming and thrashing out of control. So Im feeling pretty good about this dr, and am interested in his findings next week. He also said that there isnt much that can be done for her sight, and that we need to just try and preserve what she does see, which at this point, we feel are just shapes and light. She does see about a foot in front of her face, if you put your hand there, or hold something up from that angle, she will see it and grab it. Its kind of hard to go from thinking she will have normal vision in her right eye with glasses, to the reality that she is pretty much not going to have much sight, but at the same time, Im ready to get on with things, and help her with where she is currently at, and make the most of what we have. She is making HUGE strides at the Blind Children’s Learning Center, and absolutely loves it. She giggles with glee every morning when we arrive, and she is getting a lot out of all the therapies that she is getting, like orientation and mobility, occupational therapy, speech, play therapy, and more. Its just amazing. Her teachers absolutely love her, and I know she is in great hands every day when I drop her off. At first, I struggled with feeling guilty that she was going 5 days a week. I kind of felt like I should be able to do whatever she was getting at school. But once I released that expectation from myself, and realized that she loves school and is thriving, it has been awesome. I dont have all the training and expertise, and I dont need to put it on myself to do everything! Im glad that I have been able to allow others to come in alongside me to help her. She has been improving so much, and is singing all the time now. She is starting to talk, although its not too clear speech, but at least she is trying, and I know its just a matter of time until we are having conversations with her!
In the meantime, we are starting to plan a big gotcha day/birthday party for her the first week in May. Details to follow! We want to celebrate with all of you who have been following her story. So if you are in California, mark your calendars for the first Saturday in May!

One Response to “Vision Update”

  1. 1
    kay Says:

    Just found your site and your story with Hope is inspiring!

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