Tuesday, November 22, 2016

Following my heart again...

A few weeks ago Alice returned back to the ophthalmologist because I noticed her eye drifting more often. I see it most often when she is looking in to the distance at something. We were told to call them if we noticed that things were worse, so I did. She has strabismus, more specifically intermittent exotropia. Strabisbus is something that is very common with Craniosynostosis, unfortunately. They want to do eye muscle surgery within the next few months to prevent more problems. I'll be honest, it took everything I had not to fall apart the second that she said the word 'surgery'. The whole idea of it obviously triggers some things for me...even though this surgery is much smaller, it still doesn't sit well. I've been pretty upset about it and didn't want to tell anyone. I suppose it's my way of pretending it's not happening. We were thinking about waiting until February after the holidays and after her birthday but then we decided waiting was just harder...so we scheduled it for early December.

In the mean time I started noticing Alice's right eye not acting quite right either. I was not totally confident that fixing one eye would magically fix the problem. I researched online and started reading about Vision therapy. I started wondering if this would be a possibility for Alice. My heart would simply not accept that surgery was the only option for her. I started calling all over the area and could only find one optometrist that offered it. I scheduled her for an evaluation asap. She was evaluated today and he feels that her eyes are not that bad and is VERY confident that she will improve, with some simple exercises he showed me. He did also note the right eye was a little off as well. He didn't think her eyes were bad enough to suggest therapy sessions 1-2 times a week like many other patients do. We will followup with him in 4 months and if in that time she has not improved, we will revisit the surgery option. We have nothing to lose by giving this a try.

Please keep our sweet girl in your thoughts. We only want the best for her. With her skull surgery, I followed my heart and pushed for another opinion. I felt the same calling in this circumstance. I can only hope and pray it helps her.

Below is a video of us practicing one of the techniques we learned today. Focusing on something in near proximity to essentially cross her eyes. The hope is this will help her eyes and brain to work better together. You can see at the end that her right eye tried to focus on me and her left eye goes out.

UPDATE: March 2017
Alice is now able to bring her eye back in on command when it drifts. This is wonderful news! She is not leaving it out there anymore and I know that the vision therapy exercises have helped with this!!