Jetty has had a good weekend. His seizures were mild and about every 20 minutes. He also slept a lot.
We are working with neurologists to find Jetty's base level (somewhere in between a constant seizure state and asleep) with the correct dosage of medications. Currently, if he is not asleep he is having seizures every 10-20 minutes with the occasional seizure that doesn't stop unless given heavy duty drugs that knock him out. Even when we do that, he sometimes wakes up hours later in the same seizure. Those are never fun to deal with but he ends up coming out of it eventually whether its 2 hours or 2 days.
He has been having stomach issues as well... lots of gas and reflux! He has been having trouble keeping his food down. We decided to put him back on a continuous feed with a rate of 35ml's per hour rather than 100ml's per hour every 3 hours which is what he was up to. The slower rate as well as more antiacid meds have seemed to help control his gas and reflux as he hasn't spit up in more than 4 days.

Jetty was supposed to get his PEG tube pulled out of his belly and replaced with a button snap last week at Hopkins. We went to the appointment all ready for the button and the GI Doctors told us they want to wait 2 more months. They also said that they want to remove it endoscopically which involves the O.R.. They haven't set our appointment for the procedure yet.

We are back at Hopkins on Wednesday to meet with the Neurologist who wants to figure out whether we change Jetty's medicine or try the Ketogenic Diet again. We are hoping for a medicine change!

More pictures from our hayride

We went on a Hay Ride this afternoon!

Sunday Morning

Mommy and Daddy thought I was being quite the sleepy head this morning but really, I didn't want to help with Mommy's chores. Poor Daddy had to do them all alone.

Daddy really tried to wake me.

Silly Daddy... I can't eat ice cream!

Dasher and Dancer, Prancer and Vixen, Comet and Cupid, Jetty and Blitzen

Daddy finally buys me an outfit and this is what he gets!

I hate it... Get me out of this!

Jetty was pooped after a long day Saturday. Over 400 people showed up to his fundraiser. It was amazing. Thank you to all who contributed!

Long Day.

Jetty went to the E.R. again last night for a seizure. We were very pleased with the Nurses and Doctor that were on duty.

Aunt Allison is giving me a goodnight kiss.

Daddy said its not polite to poop at the dinner table. But I wasn't eating, he was!

Tired of watching him eat.

Mommy was sneaky and caught Daddy and I at dinner.

Fundraiser

(click on picture to enlarge)

The head coach of Washington College Lacrosse, JB Clarke along with his wife Lisa have organized this fundraiser to support Jetty and other children like him.
If you don't have plans for the day, please join us. Also, I am told that they are looking for Silent Auction Items so let them know if you have any ideas.

Hello Mr. Taylor