We apologize for not updating the Blog in a while. As for many of you, it has been a hectic couple of weeks with the Holidays approaching and the blizzard that came through.
Jetty has had a tough time here lately and didn't get to enjoy the snow. He had his feeding tube taken out last week and replaced with a "button". The procedure for removing the old tube is not quite as sophisticated as I had thought it would be. One Doctor holds him down and the other one grabs the tube and yanks. Jamie had to leave the room before hand after they told her how it was done. He handled it well but then again he is a tough little guy.
He lost almost 1lb 2 weeks ago so we are now back on EleCare formula. He is up to 12.3 lbs now which is still WAY under the normal weight of a typical 6 month old.
He isn't sleeping much because of his seizures. His seizure medicines are supposed to make him sleepy but they don't so obviously we need to make a change. The difficult part is that he is already on 3 different drugs and they don't want to add a 4th.

Below, Jetty finally dosed off after being a wake for 18 hours.

Erin and Jennie came to see me.

I'm pulling her finger but nothing is happening! What gives??

Christmas Tree

Putting the finishing touches on the tree.

Finally my first tree is complete.

Now its time for a well deserved nap!

I look good in my carseat.

Deer Season

Mommy is so silly. She aligned Daddy's deer mount up perfectly without him knowing. And I thought I looked dumb!

Some things we are thankful for...

Jetty had a pretty good Thanksgiving. He spent it with a lot of family and friends.

His seizures are steady but under control for the most part. He is almost 11 lbs and is still gaining and losing weight so that is our current challenge.

December is full of appointments (GI at Hopkins, Neuro at Hopkins, and several pediatrician appointments for his RSV vaccine and other standard check-ups). His weekly visitors are Physical Therapists, Occupational Therapists, Cranial Sacral Therapist and Hospice. Jetty has a nurse stay with him during the week and another nurse who comes 4 nights a week. That has been a big help.

Every day is different with Jetty and we are thankful for having such a strong and amazing Son.

Aunts: Debbie, Kathy and Lauren

Tyler, Tracy and Aunts Debbie, Kathy and Lauren

I am not going to smile until I get some of that Pumpkin Pie!

Now we're talkin! I hate to eat and run but I have places to go and people to see.

Uncle Ed, Aunt Deana and Aunt Allison

We are two hard working men who sometimes need a good nap at the end of the day. Or we ate too much dinner and need to sleep it off.

Getting a quick nap in before game time.

Who's your daddy Carson Palmer!!! Thats what I'm talking about!

Touchdown Ravens! Heeeeeeey..... Hooooooo!




We lost. I hate the Ravens

Mommy and Daddy like to sneak pictures of each other sleeping.

Wake up Mommy, we have a long day of football. I am going to need chili, wings, chips, dip, beer... and that should get me through the first game.

The Chili isn't cooking itself!

This bed isn't big enough for the 3 of us. One of you two needs to get out.

Halloween Pictures

Of all the halloween costumes out there, they dress me as Happy Feet.

There are more pictures of me to post but Daddy left his camera at a Halloween party that he attended. Mommy let him know how stupid he is!

His first smile picture!

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