Cerebral Palsy

The more I've read and researched, I realized I wasn't reading between the lines when I last talked to the neurologist about Wesley's MRI (which is scheduled for Thursday FYI). When she said she wanted to do another MRI so that Wesley can get as many services as possible, I now realize she is probably going to diagnose him with cerebral palsy after reviewing his new MRI. CP is a common diagnosis for kids who have hypoxic-ichemic encephalopathy (damage caused by a lack of oxygen and blood flow to the brain) and yet is not talked about until an official diagnosis is made (often not until 3years of age!). It's as if the doctors don't want to even mention the possibility it until they are ready to diagnose. I find that whole idea strange. It's as if the docs don't think the parents are strong enough to handle the idea of CP or as if all CP parents are severely disabled. After living through my child almost dying, I think I deserve to know any possible diagnosis the doctors are thinking about. I think I am strong enough to be let in on the secrets. Otherwise, the fear of being left it he dark leads me to suspect every possible diagnosis, reasonable or not, because I haven't been told anything by the doctors. Their secrecy also makes cerebral palsy seem like the worst possible diagnosis when it can range from very mild to severe. Anyways, CP is my suspicion and both of Wesley's physical therapists agreed that it is a likely diagnosis even though his doctors have yet to mention it.

 So... Where to go from here? Well my first step was figuring out what CP patients actually look like. Since I realized Wesley was probably going to be disabled for the rest of his life (although I'm not counting out another miracle), the images of every disabled child/teenager I have ever met dwell in my mind. Without knowing the health history of most of those people, I'm left to worry where in the spectrum Wesley may land. So I started watching YouTube videos about cerebal palsy. Although I feel much more informed now, it didn't really give me an idea of what Wesley's life may be like. CP patients vary in severity from intellectually normal with an abnormal walk, to having a severe stutter, to being non-verbal, tube fed, and immobile. There is no way to know at this point where Wesley will be. His muscles are getting stiffer by the week so things he can do right now may become more difficult as he grows. What I do know is that he is getting a lot of awesome help from his therapists (and doctors). Wesley is behind developmentally but it is so hard to know right now the extent that he will develop. The impatient part of me desperately just wants to see into the future but at the same time I'm not anxious for the future to be here because I'm enjoying the time I have with my sweet baby boy. Hopefully some of the current clinical trials will show some promise in the next 10 years and they will have found a way to reverse the symptoms of CP.

 *This evening before Wesley went to bed I was holding him and talking to him and he looked up at me and smiled. That's the first time he seemed to smile "at" me rather than as a result of something he or I was doing. It was incrediblly sweet.*