Since we live in a smaller county than many in the surrounding area we are sometimes limited on what therapists can bring to help Jude. Many kids we know receive standers, chairs, etc on loan, but since our county is small they don't receive as much as other counties. We are thrilled though we the service we receive, and I have nothing but praise for Leah, and Amy Jude's therapists. Yesterday a vision therapist came with Leah, and I came home to a HUGE suitcase full of vision stimulation toys. I was so thrilled to walk in and see such wonderful equipment to help Jude.
Mike said the therapist was so excited to meet Jude, because she had read his story in the newspaper. She spent a lot of time with him evaluating what she thought his issues were, and talked in length with Mike. She said that she agrees Jude has CVI - cortical visual impairment, and that she noticed Jude has classic symptoms that point to this diagnosis. My understand that CVI is not true blindness, but a lack of the brain being able to process the images. Therefore, the images can some through scrambled, or they may not be able to see them at all. So Jude will look at me, and seem to have a moment of clarity where he smiles, but then he will sharply turn away. I always thought this was from over stimulation, but now I believe this could be because his brain is not processing my image correctly. We already know that the doctor said Jude's optic nerves were gray, which is another indication of stroke, and cvi.
So I rummaged through the box admiring all the nice gadgets, and I took them out one by one. I found some tiny socks with bells on the toes, and I slipped them on Jude's feet. He wasn't as impressed with the socks, as he was with the bell bracelet for his arm. He kept ringing his bell bracelet giggling over, and over.
So today at work I had one of my wonderful customers come in and talked with me. His son had been in a motorcycle accident a few years ago, and he was asking me about liability for home health workers. It was a topic I could relate to, and our conversation grew into personal experiences. We discussed therapy, hospitals, and more. He was telling me about the issues his son has, his struggles, his pain, and his aggressiveness. In a meek voice he said "I know this will make me sound like a bad parent, but there are times I think that modern medicine shouldn't have saved him". It's a heart wrenching thing to hear, but one I have heard multiple times from parents with children that suffer traumatic brain injuries due to accidents. With Jude we know no other way of life. We know that it's unlikely he will ever marry, or have children, and we know he will always depend on us. We accept this, and we honor the challenge. Although, with children struck down in the prime of life it's so challenging for these parents to watch their children's daily struggles just to breath, eat, swallow, and function like they used to. I assured him that although it seems like a terrible thought, it's a natural one, and that I had heard that same sentence from others in his same situation. No one can really relate unless they have been in that situation, and know first hand all the thoughts you encounter. I wanted to give him a little hug, but I just offered kind words. You could tell he was a strong man that offered his son a great place to live, so I know it was a fleeting thought.
Have a good weekend all. I have been 100% busy today, so I am getting back to work.