HAPPY BIRTHDAY JETTY!

HAPPY BIRTHDAY!

I asked Jetty this morning what he wanted for his birthday. He said that he wanted me to update his blog for all of his fans.

We have never been so excited to celebrate a birthday. It is hard to believe that a year ago today we were rushing to Johns Hopkins, terrified and scared for our unborn child.

Day after day we were given unbearable news and reports from our Doctors. They felt they needed to prepare us for the worst which took years off our lives.

Although his outlook on life is still not good, he has passed every timeline he was given.

From needles to eeg's, tubes to probes, surgeries to diets, Jetty has been through so much in just one year that it all seems like a blur. (kind of)

We can not be any more proud of our son. He is the strongest and sweetest boy alive and we enjoy every moment.

Thank you to all of you for helping us make it through this past year. We are very fortunate to have such wonderful friends!

This picture was taken this morning. He is off to a good start on his birthday!


I'm just going to relax today and wait for the gifts and cake!


Daddy's sunburnt skin is like sleeping on freshly washed sheets just out of the dryer.

Mommy's new shapes are starting to get comfortable.

Johnny-Jump-Up is more like Johnny-Hang-There. Pretty disappointed with this thing.

My new ride!

The harnesses are too big for me so they put my carseat in here. Now I look stupid riding down the road in my new ride with my feet sticking out.

For a quick health update: Jetty is now 17.5lbs on his first birthday. He is currently cutting teeth which is causing him serious pain. He tends to have more seizures when he is in pain or discomfort. We can't give him any tylenol or other pain killers as they contain sugars and carbs which his diet strictly prohibits. Even certain sun screens, lotions and shampoos are prohibited!

He hasn't reached any milestones yet but we work everyday with him and he has two Occupational Therapists come once a week.

Some days he can hold his head up for a few minutes at a time!

He can't sit up, roll over, smile, or look at us yet... but these are our goals.

Jetty has been on the Ketogenic Diet for about 2 weeks now. We are noticing some major improvement in Jetty's seizure activity. Jetty is very calm and relaxed a lot more than before.

He is only a few weeks away from his birthday and we are all very excited to reach that accomplishment.

Mommy said my chin is starting to look like Daddy's. I said, which one?

2004 Dateline NBC (part one)

A 2004 Dateline NBC special on the Ketogenic Diet.

2004 Dateline NBC (part two)

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.

April 6th

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?

Carol Fleetwood painted this picture for us. The only things more beautiful than this are the real Jamie and Jetty.

9.5 months old!

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.
What do you want me to do?
First I'm too skinny, now I'm too fat to bend my arms.
They are the ones who won't quit pumping this stuff in me...
I'm starting to get concerned because I heard them mention
Foie Gras in the kitchen the other day!

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.