Joel's Seizures & Vision

I know that today is June 2. I was going to revise this post which I composed on April 28, but my information now is totally different, so I am going to post this as is. Don't know why I didn't post it at the time... It gives a good view into what life was like in April: Wow, I haven't blogged in a while. I guess that's what happens when doctor appointments take over your life. I am still trying to take pictures every day for Project 365 (I have missed some days) but there is no way I can catch up. I may try to start posting them again soon, but maybe not, depending on how life goes. The last month has been very emotional. Joel's seizures have increased lately. He's now having about 5 per week. We are adjusting medication to see if we can get them under control, but are also going to be heading back up to UCLA for an inpatient EEG. This will be torture for everyone involved. Just setting foot on the UCLA grounds reminds Joel of his surgery. And he still gets terrified every time anyone medical comes near his head. I have no idea how we are going to do this. Joel's vision has also been getting worse. He had an opthamology appointment a couple of weeks ago and for a couple of days we though he had lost half of what eyesight he does have in his right eye. Let me backtrack a bit. When Joel had his surgery at fifteen months old, they removed the part of his brain that controls the right side of his vision in both eyes. Therefore, he has no vision in the right visual field of each eye. About seven months ago, the opthamologist found a tumor in Joel's right eye. (Tuberous Sclerosis can cause benign tumors to grow in the vital organs.) The best we can do right now is to watch it, so when I took him in for a six-month check his vision was looking worse and they though he had lost half of the vision he had in that eye. I was heartbroken. It was awful to think that my baby was going blind in his right eye after all he has been through. And then to think that his left eye could follow at any given time was too much for this mother's soul to bear. I found myself crying, which I do not normally do. Mourning the loss of my baby's eyesight. A couple of days later, we took him to a retna & tumor specialist who made me feel much better. He said the center of Joel's retna was clear and that is the most important part for eyesight. He didn't think Joel had lost that much vision (other than what he had lost from surgery). A possible explanation for Joel's eyesight seeming worse is that his right eye doesn't seem to be tracking with his left eye. That's bad, too...but not as bad. Not tracking well can cause blurry or double vision which is made worse by bright light, so the brain tells the eye to squint which is what we are seeing a lot of. Please pray for his vision to get better and not to get worse and for his seizures to go away. Thanks for all your support. It is much needed.