More Appointments

Whew! What an exhausting day! Brian, Deacon, and I spent the entire day at the hospital appointment-hopping from neuro-opthamologist, EEG, and lab work.

First appointment was with the eye specialist. They dilated Deacon's eyes and sent us to the waiting room, where we sat for almost 2 hours. Finally we were called back to see the doctor.

The good news: Deacon does NOT need glasses. Seriously. Deacon's prescription is +1.75 and she said that she typically doesn't even CONSIDER glasses for anything less than +3. She told us the near-sighted/far-sighted prescription he was given is a pretty typical one for children his age, just because the eye/vision hasn't completely developed for small children. Looks like I will be calling the eye doctor tomorrow for a refund on the $500 glasses.

The bad news: (At the moment I don't know if this is BAD news, but because it is not good news, it is going in the "bad" category.) Deacon was diagnosed with Cortical Visual Impairment due to his Infantile Spasms. This means that his eyes are healthy and work exactly as they should, but the brain (occipital lobe where we already knew there were issues) doesn't know how to process what is being seen.

Are you ready for your lesson of the day?? Here is more info regarding CVI:

Children with CVI frequently have fluctuating vision where their vision may be different at various times of the day. Their central vision may have spotted blind spots and their vision may be analogous to looking through Swiss cheese. Consequently, they often do not make eye contact and their eye hand coordination may be poor. Children with CVI often have many interesting behaviors. Aside from not making eye contact, they are highly stimulated by high contrast, rotating, and moving objects. They frequently look at ceiling fans, the scrolling credits on videos, and some stare at blinking and flashing lights. A small percentage are extremely sensitive to glare and bright light and will keep their eyes closed or turn away and stare into a corner of the room. Children with CVI frequently have very sensitive peripheral vision and they can become overwhelmed when they are in crowded places that have a lot of visual noise. Their visual attention fluctuates tremendously and they may demonstrate short periods where they use their central vision to focus and identify objects but their attention quickly weakens and they then glance at objects with their peripheral vision. During these times, they appear totally blind and use their hands to interact with their environment rather than using their vision to guide their hands.

The doctor gave us the impression that if we get his spasms under control, his vision should improve significantly. I think this is a little comforting to us just because he doesn't have a bunch of separate issues to tackle, but just one BIG obstacle for us to battle and overcome. And with spasm elimination Deacon's life will change a million times over. But for now, this diagnosis means he qualifies for visual therapy through Early Childhood Intervention, bringing him to a total of 3 therapy sessions each week.

Next came the EEG. Deacon was ready for a nap by this point, so it was perfect timing for his testing.

Deacon with all of his wires

his poor hair after plugs were taken off (the red spots are from the marker they used to mark wire placement)

After the EEG was bloodwork where they attempted to draw blood and finally got it right on the 3rd try. We didn't receive any results today for the lab work or EEG, but will hopefully find out a lot more on Monday with his Epileptologist appointment.

Deacon was amazing the entire day and Brian and I enjoyed spending the time with him and seeing the big improvements he has already made since being on his new medication. He is laughing, smiling, and making eye contact so much more, and is having about 4-7 spams a day! We are hoping that maybe just by increasing his current prescription he will be spasm free and won't need to try ACTH.