The more I try to learn about the types of problems Olivia might be having, the more I am confused. There are a zillion different types of processing disorders having to do with the eyes. I'm not even sure thats exactly what is going on, but I think so. Apparently, often after seizures these pathways from the eyes to the brain have trouble. Olivia doesn't even have a diagnosis of an ocular processing disorder, but they suspect one. CCVI can't diagnose it, that has to come from your neurologist, and some neurologists don't even believe its an actual medical diagnosis. Others try to diagnose all their patients with a processing disorder. I feel like our neurologist is very patient as far as having a diagnosis and would not over-diagnose. We don't even see him again until the first week of April.
I want so badly to understand what she is going through and what the world looks and feels like to her, but she can't tell us, so its kind of a guessing game. I want to give her the best shot at succeeding in life and having the best tools and the best care, but ultimately I can't know.
Despite my defeated tone, today was a very good day for her. This morning she played, actually played, for two hours before her first nap. Usually she tires after 30 min. I did the exercises the CCVI teacher gave me yesterday and it seemed to make a lot of difference. When I put pressure on her shoulders and guided her from the elbows she began to play with toys after a few idle attempts. After that I just had to hold her elbows and she controlled her forearms and hands. So, this new concept seems to be just the thing for her and really exciting for me, except that its utterly exhausting. Every second that she is awake I feel like I am cheating her unless I am right there helping her play because she can't do it on her own. Thus, I barely got a shower today and my house is a disaster. But, Olivia was WAY more productive and was actually awake a lot more during the day than usual.
Please pray for me. I love my daughter and am so grateful to have such an integral part in her life and education, but when someone's every minute depends on you, it is tiresome as rewarding as it is. I am confident she WILL begin to do things on her, as she is almost bearing all her weight on her hands and knees and more interested in practicing crawling, playing for a minute or so on her own and seeming more interested in the world in general, but it will be a long road. I guess we've got to buck up and strap in, cause here we go!