Jetty is a big brother!

Jetty's little brother was born on Sunday, September 19th. Cregar Clay Fleetwood was 8lbs 8oz and was 21 inches long.

Jetty has been doing rather well since the last update. We have taken him off of the ketogenic diet as it was no longer helping Jetty. The Ketogenic Diet Doctor didn't think it would in the first place. He is no on Phenobarbital as well as Clonapen. His seizures aren't too bad and he is averaging about 45 a day.

Below are pictures of Jetty meeting his baby brother for the first time as well as seeing his Mommy after 2 and a half days of separation!

Back Home!

All the doctors were very impressed with Jetty on Wednesday when he showed them that he could breathe just fine without the help of the ventilator. I don't think anyone expected him to come around that fast! With Jetty breathing well on his own and the ammonia blood levels coming down to almost normal they decided on Thursday he no longer needed to be in ICU and was moved to a regular floor. This made Mommy and Daddy very happy and even happier yesterday when they said he could go home. However....the fact that two of Jetty's seizures medicines have been taken away and the ketogenic diet being temporarily on hold, has caused his seizures to be worse and pretty much constant. For the next few days Jetty is to be given Ativan (the medicine that makes him sleep) around the clock to keep his seizures under control while the ketogenic diet is restarted and has time to take effect. So for now, Jetty will sleep and catch up on some much needed rest and hope that when we stop the ativan the diet will work again.

Jetty had a bad day yesterday. He started having trouble breathing around lunch time. His face turned white and his lips turned blue. We rushed him to the ER where his heart rate was 20. The ER team at Chester River stablized Jetty and did a wonderful job. They got his heart rate back up and sedated him. The only thing I didn't like was when they drilled a needle into his shin bone which was tough to stomach. Jamie said it wasn't a big deal so I guess I'm ok with it now. I am not sure but i think it was a DeWalt compact drill. According to Jamie, that procedure is called a intraosseous and basically it is a way to get a quick IV hookup. They then called Hopkins and Hopkins sent their medivac transport team for him. We flew over and he is now in the Pediatric ICU. He is currently heavily sedated and on a ventilator. Why did he stop breathing??? They have ruled out aspiration and feel that the cause is either one of two reasons. First reason may be that his seizures have evolved to where they now effect his ability to breathe on his own. Hopefully this is not the reason! Possibility # 2- His ammonia level in his blood was super high. This can have multiple effects on the human body. The elevated ammonia level and LFT's are a result of his liver not being able to handle the high toxicity of his seizure meds.

They now have taken him off of all of his seizure meds except for phenobarbital. They are flushing his system to remove the ammonia. We are waiting to hear about the catscan results as well as results from many other tests that were done over night.

Hopefully when it is time to go, they will take us back by helicopter too! Jetty was asleep for the ride over.

Some pictures we have taken with our cell phones over the past month

Jetty gets weighed every Friday by Hospice and he was 15 lbs 12 oz at his yesterday's weigh-in. No where near the normal weight of a child his age but he is not a normal child. He was 19lbs in May before we put him on the Ketogenic diet.

Ativan is a drug we give Jetty when he has severe seizures that don't stop on their own. The drug pretty much shuts down all brain activity and he falls a sleep for a long period of time. Before Ketogenic Diet, we were giving him Ativan about once every two weeks on average. After starting the diet on May 2nd, we saw a dramatic improvement with his seizures. We had to give Jetty Ativan about once every 1-2 months on average. We wish that were the case today. The past month has been pretty rough for Jetty. We have had to give him Ativan every day for the past 9 days.

It looks like we may have to take him off the diet.

At first it seemed scary...

But after a few minutes, I kind of liked the pool!

How come barney doesn't get a raft like this?

Hey Mommy... it looks like you're taking on water!

Getting ready for my first haircut!
Daddy wanted me to go to the barber shop but mommy insisted I went to Sherri's.

I hope Mommy cleaned my ears this morning!

All done! check me out.

Here's a side view for you.

Getting too long for the scale!

13 months

Jetty took a pacifier for the first time a couple weeks ago. He kept it in his mouth for about 20 minutes before falling asleep with it. He hasn't taken it since but we keep trying.

Taking a power nap to prepare for Rock Hall's fireworks

The fish may weigh more than me but I smell better.

Jetty is now down to 16lbs and his seizures have started to get worse. We were told to switch his formula to another kind but we are having trouble locating a pharmacy that supplies it.

Jetty is heading to Bethany Beach next week so we should get some good pictures!

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.