Jetty has a little sister!

It may look like a smile to Mommy and Daddy but really I just tooted.

I sure hope my baby sister, Olive, is going to help me fend off Clay! Clay is very sneaky... he sometimes likes to give me a gentle hug, then out of the blue... bam!... a smack in the face!

Jetty is almost 30 months old and doing great. His daily seizure count is down and he seems to be very comfortable. We had to move his bedroom upstairs to make room for his new little sister. He seems to like his new bedroom because he is sleeping more at night than ever before!

He is now 25 lbs which is the most he has ever weighed.

jetty has had severe seizures the past week and after days of trying to figure out why, we decided to get him checked for kidney stones due to his calcium levels. chester river did an ultrasound and found he has kidney stones and gullstones!!!

so we gave him some morphine which helped with the pain brought him over to the hopkins er. so here we are, waiting for the plan. the goodnews is jetty is finally calm (morphine) and sleeping for the first time in 3 days! i also want to apologize that my blackberry will not let me use capital letters???

Jetty turns TWO!

Jetty relaxing with his Aunt Debbie!

Two years ago, we dealt with one of the hardest moments of our lives... despite the poor prognosis that he was given, Jetty is still here and fighting. I have never been so proud of him. He is an inspiration to us every day.and we are truely honored to have such a son as well as the family that came to celebrate the day with us.

Surrounded by family and presents!

Taking a nap so that I have enough energy to open all of these gifts!

23 months old

Jetty's Occupational Therapist and Physical Therapist help Joe from Chesapeake Rehab Equipment measure Jetty for his new custom wheel chair being ordered. We are expecting it to be delivered in 120 days.

Recent Jetty Pictures...

If you mess with my covers one more time, you're going to find yourself on the floor!

Grandpa thinks I'm being all cute and cudily... little does he know I have a load in my pants!

Jetty had a Neuro checkup yesterday at JHU. They could not believe how well he was doing and the fact he was now 23lbs. His last visit was in October (4 months stretch!!!) and we have not changed his seizure meds since. The Neurologist told us yesterday that he will have his "ups" and "downs" and to enjoy his "ups" when he is doing well, and fight through his "downs" during the bad times...easier said than done!

We are looking forward to warmer weather and getting him out of the house. We plan to spend lots of time on the boat and in the pool this summer. Other than that... he is gaining weight, cutting teeth (slowly and painfully), fighting colds, and being cute and cudily.

All's well on the home front!

Jetty gets very exhausted dealing with his little brother!

WOW.... I am now 2 months behind!

Below are some pictures that I have on just one of our three cameras. So I promise to upload more tonight!
Jetty has been doing considerably well. His seizures are currently stable, no ER visits since September (when they flew him to Hopkins)!
Currently, he is dealing with a bad Cold and also two molars coming in. His reflux is bad right now as well... but we will take these problems any day compared to others he has had. He is growing (slowly) but atleast his weight is going up and not down.

His new brother really likes to keep a close eye on him.

Jetty got a nice warm hat for Christmas!

Santa came to visit the boys... Jetty never woke up for it and Clay kept eating his beard.

I promissed you a Thanksgiving picture of Jetty eating some pumpkin pie.... here it is!

Since it has been so long since my last update, I better fill you in on everything....

Jetty is now 17 months old and is still as strong as ever. He is off of the ketogenic diet which has made things easier on us. His medicines are easier to give him and we can do oral stimulation with fruits and other sweet foods. He is not eating through his mouth but every now and then he will react to the taste.

His seizures are different everyday... some days he has one every couple minutes, some days he has one every hour. But they have been short and comes out of them on his own.

He has been gaining weight here recently which is a relief! He was 18lbs last week which is a huge improvement. He is cutting teeth which is miserable and causes him to have more seizures but he is handling it well.

He still doesn't smile or express emotion but he does let out a big yawn and some strong stretches from time to time which gives us a chuckle.

I am not sure if he likes having a little brother yet, as Clay seems to absorb all of Mommy's attention. But he has his Daddy there spoiling him constantly.

We are much more excited for Thanksgiving this year. Jetty is going to get some mashed potatoes and pumpkin pie put in his mouth. I'll be sure to take a picture of it for you!

Jetty had a procedure done at Hopkins back in October. They scoped his stomach to see if he had any issues going on in there which may be causing him pain. They found nothing out of the ordinary except some redness and inflamation caused by his medicines. We started him on some more antiacid drugs.

This is how Jetty and Clay get to their grandparent's house. Grandma doesn't like it.

Nurse Melissa bought Jetty and Clay matching pirate outfits.

I fall asleep on daddy everynight while he watches tv. If he's not here, I don't sleep.

Jetty and his little bro.

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.