Mike did doctor duty twice today for little mister Jude. He had a pediatrician appointment who confirmed that Jude did have a sinus infection now, and he is now on medication. He then skipped over to the ophthalmologist for Jude's first eye check up. The neurologist wanted to have Jude's vision checked due to his other issues . Mike explained that the doctor dilated Jude's eyes so she could see inside. She is the first doctor that we have visited that immediately pin pointed that the damage she saw looks like "the cause of a stroke". She said his optic nerve is gray from lack of oxygen, and damaged. She then said the eyes themselves are "beautiful" so it's a communication problem from the brain to the eye thus CVI. CVI is cortical visual impairment, for more info you can read here http://en.wikipedia.org/wiki/Cortical_visual_impairment. He is also diagnosed with optic atrophy (the gray optic nerve), and intermittent extropia (lazy eyes or eyes that wiggle). The prognosis is "guarded", and we are to go back in 6 months. Since Jude is so young we are once again on a "wait and see" mode. My cousin joked, and said rather than naming Jude we should have given him a symbol like Prince because everything is "wait and see". This in turn creates new information that I will need to share with the states therapy departments.
Jude woke up crying last night two different times with seizures. I am hoping that once we knock our this sinus infection the seizures will slow down. I am becoming convinced though that the topamax is no longer working. I have heard there is a seizure drug called Keppra that has been great for kids. I am not sure they give it to kids as young as Jude, but we shall see. Mike brought Jude by to see me after his doctor appointment. I looked at his tired face with his dilated eyes, and I saw the little boy inside. I also saw that little boy has some serious issues that will need treatment. We are there with him though, and just need some support. I knew in my heart Jude had vision problem before being told. He responds to light, and has moments of clarity, but it's still sometimes hard to understand why one issue after another keeps coming up.
My cousin called today asking if Em can go to a spring break camp. I would love for her to go so I am hoping we can swing it.