I used to consider myself a positive person. Life was a good thing punctuated by the occasional unpleasant experience, such as going to work or paying taxes.
Our daughter's condition hangs over us like a cloud. Life now seems like a darkness punctuated by the occasional time I can forget that this has happened. The one bright spot that always makes me happy is our other daughter, Katherine. I have long wanted to be a parent, but not until I became one did I truly understand the love one can have for a child. I would do anything to protect them. That is what makes Jocelyn so hard, as there is little we can do.
Her life expectancy is based primarily on three factors: Whether or not she has seizures, how mobile she is, and how able she is to feed herself. Seizures usually turn up in the 4 to 6 months. No sign of them yet and they passed the 4 month mark 2 weeks ago. There are things we can do to improve her mobility, such as working with a physical therapists and we can continue to try to feed her as much as possible.
Her life expectancy is 15-20 years, depending on the three factors. Her chance of seizures are about 80%. It is likely she will, at best, be confined to a wheelchair and we have had little success bottle feeding her.
We intend to keep trying, but the chances of improvement are slim.