April 28th 2010.

Jetty is now 19lbs. We have had to double his meds to keep up with his seizures. He is being admitted to Hopkins on Monday for the entire week because he is getting put on the Ketogenic Diet. They tried diet when he was 9 days old but he wasn't able to produce the ketones. His sugar level also dropped to a dangerous level so they took him off of the diet.
We are really hoping that this diet works this time and it helps his seizures.
Our goal is to keep him comfortable and he isn't when he is seizing. He is very comfortable when he sleeps but we agree that he can't stay a sleep all of the time as that is no way to live.

We have learned to appreciate the little things he does such as a large yawn or a sneeze. Because during that split second, he resembles a healthy boy. And if he is yawning, sneezing or coughing, he is not seizing.

He has been through a lot in 10 months but is still hanging in there. He has his really bad days and nights but always bounces back.

Listen... sometimes I just want to relax without my pants. Its not a crime so leave me alone.

Daddy brought me this shirt back from The Masters.