We have had a good week. Busy as always, but good.
Emily loves school. When I get her up and say "Are you ready for school?", she has an ear to ear grin. She gets very excited the more we talk about it. I cannot tell you how happy that makes me. One more student was added to her class this week - bringing the total to 4 kids. There are 2 boys and 2 girls. They all seem to be having a blast so far. She is pretty tired when she gets home. She is thrilled that I bring her home and put her to bed. If I do anything else, she lets me know she is not happy about it.
Her time at Children's is going well too. They wear her out completely. She falls asleep in the car every time. She is not one to sleep in the car - she is too busy looking out the window and I think she is afraid she might miss something, but after therapy, she conks out after about 5 minutes on the road. She has been cooperative, for the most part, with her therapy. She was in her stander for one hour on Wed with no complaints. That is very unusual! She would always complain about her stander or pretty much anything else the PT would make her do. So that is progress.
This week we had two other appointments. On Thursday, we met two ladies from the Association for the Blind and Visually Impaired. I cannot even count how many people have told me to call this organization. I never did because I felt like I could not fit one more thing into our schedule. I found out that they could see her during her therapy sessions so I finally called. For the first appointment, they came to our house. They spent some time asking me questions and played with Emily a bit. The therapists believes that Emily has good functional vision. She thought that Emily used her right eye more than her left and that her peripheral vision was good. She said that they could come up with a game plan to work on the areas of her vision that are weak, but wanted to wait until we saw the ophthalmologist to see what she said.
On Friday, we had an appointment with the ophthalmologist. She is a new doc and I have heard great things about her. Emily did pretty well despite the fact that she came from therapy and didn't get a nap in between. The only time she got antsy was when we she had her eyes dilated. She didn't like the drops and she didn't like waiting 30 minutes before the doctor finished the exam. Waiting isn't exactly Emily's favorite thing to do. The doctor did a thorough exam and performed a bunch of tests. Emily wasn't always cooperative. I think she got bored at one point and decided not to do what she was asked. She didn't like it when they tried to cover one eye. She would spend more time looking at their hand rather than looking at the pictures or objects they wanted her to follow with the uncovered eye. She also wasn't thrilled when they tried to take a picture of her eye.
Overall, the doc was able to get some good information. She did not agree with the assessment of the Association for the Blind therapist. She said Emily does use both eyes but seems to switch back and forth between the two. She said Emily's peripheral vision is a strength. When she looked at the pictures of the eyes, she said that Emily's eyes were "ridiculously healthy". She said that was odd given her history (with the damage to her brain). She expected the nerves behind the eye to be damaged, but Emily's are pink and healthy. That is a very good thing! She added a few diagnoses to Emily's list:
Cortical Visual Impairment
Exotropia, alternating, with A pattern
Esotropia, intermittent, alternating
Our previous two doctors would never give us a specific diagnosis and I was getting frustrated by that. She needs to have a diagnosis to get services, so I wasn't sure why they were dragging their feet. So I was glad that this doc was able to say "officially" that Emily has Cortical Visual Impairment. We will be working with the Association for the Blind to make the most of Emily's vision strengths. The doctor said that everyone at the hospital will be receiving training in November. They will learn better ways to test functional vision. After that, she wants to schedule a Cortical Visual Impairment assessment for Emily. That would give them much more info about Emily's vision and where to go from here.