Nurse Jenn decided to change his feeding tube, so we decided to take some pictures of Jetty without everything stuck to his face... and what do you know, he woke up for a few minutes!

Jetty got more camo swaddles today! Some great friends of Jetty baked cookies and delivered them to the NICU. The nurses loved them and Jetty is now one of their favorites. He is getting all kinds of attention. These Baltimorians don't seem to understand the orange camo. I told them that it is so he doesnt get shot in the woods by a Baltimorian.

Jetty is two weeks old today and gets a crib!

Jetty had a good night last night. He didn't need as much oxygen as normal and he never required the heater. This means he is starting to hold his temperature. The nurse this morning he mentioned something about moving him into a crib. I tried to keep Jamie from getting too excited because this nurse just met Jetty at 7am this morning and might be speaking too soon.

Jetty meets his Great Grandmother.

Ketogenic Diet

According to the Neurologists, Jetty is the youngest known patient to be put on the ketogenic diet. They can't say for sure because there are several cases in Asia that they don't keep track of. The diet is used for all seizure syndromes, not just Ohtahara.

There are only a couple hundred reported cases of Ohtahara Syndrome world wide. Johns Hopkins has seen 4 of them.

We met with the dietician who explained the details of the diet to us. When Jetty gets older and out grows the formula, he will have to eat spoon-fulls of mayonnaise and butter as his meals. This is devastating to his mommy who despises mayonnaise. Daddy is happy he doesn't have to be on a mushroom diet.

Nothing new to update today. Jetty is still having seizures and sleeping. He started his Ketogenic diet last night. The right side of his face was puffy when we got here this morning and still is a bit.

This morning the Neurologist told us some more details about Ohtahara Syndrome. He said that this is one of the worst syndromes to have. Medicine has very little affect on the seizures. He wants to start Jetty on a Ketogenic Diet which is a high fat and protein diet. This diet was started by a Doctor in South Korea.

The hardest part is watching Jetty have his seizures and not being able to help him.

Its hard to believe Jetty has so many problems when you look at him.

We really want to unhook all these wires and run!

Jetty is getting so tired of Mommy's kisses.

Sunday, June 28th

Above is a picture of me and Mommom

Today has not been a good day for us. The neurologists came in this morning announcing that the EEG results was the worse one yet. They feel that Jetty is suffering from the Ohtahara Syndrome which was caused by the cysts on his brain. This syndrome, along with having no corpus collusom, has just made this road much longer.