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.
Mommy said my chin is starting to look like Daddy's. I said, which one?
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.
Grandpa Fleets and Jetty
I mind as well be in my crib..... will you speed this thing up already?
How am I supposed to reach the steering wheel from back here?
Jetty is now 17.8lbs and the GI Doctors at Hopkins were very pleased yesterday. He is finally on the growth charts!
I know, I know... my cheeks are getting fat.
I love Sunday mornings because Mommy lets me get in her bed. She doesn't let Daddy eat in bed but she lets me. She told Daddy that I don't leave crumbs.
Jetty is now 16.5 lbs. We are weening him off of Prelone (steroid) and Keppra. We just added a new drug called Topamax which has many purposes, seizures being one of them. The plan is to give the ketogenic diet another try in May. His seizure activity is a bit worse now then it was a month ago which is why we are making another change to his drugs. Hopefully Topamax will have some positive effect for a while. He hasn't yet cut any teeth but we think they are close because he is starting to drool a lot and is more fussy at times. Chewing on fingers seems to calm him down sometimes.
