February

It is February 10th and a lot has happened since my last post. It takes 30 inches of snow for me to sit down at the computer and update the blog these days.... Sorry.
We went to Ohio in January to visit family. They came to Chestertown last June to meet Jetty for the first time. Unfortunately, they never got to meet him since Jetty was kept in Baltimore. They have been so supportive of him over the last 7 months with constant cards, gifts, etc. that we had to surprise them with a visit. It wasn't an easy car ride for him but he handled it rather well and behaved himself while we were there.
Jetty was doing really well when we returned and continued to do well for about 2 weeks. He has been fighting a cold for about 2 months and we thought it had cleared up but then it came back. We have been keeping a very close eye on it and have been able to keep it out of his lungs. He handles pain and discomfort differently then others. Rather than crying, it seems to trigger more seizures. When he has his long seizures (his normal seizures don't last more than 30-90 seconds), not only can he not eat but he also empties his stomach. Our goal is to keep him strong and comfortable but these longer seizures don't help.
He is also starting to cut some teeth which cause him pain... hence more seizures.
Jetty wanted to say hi to his ER Nurses at Chester River Hospital. He sure does get royal treatment there (believe it or not, I'm not being sarcastic). No matter how crowded it is, we get taken right back and put into a private room and constantly have 4-5 nurses at his side. Due to our many visits to the ER, we seem to have established a routine. They put an iv in him and then give him Ativan which we can't give him at home because it is given intravenously. Each time we go, he seems to require a larger dosage. I am serious when I say that the ER staff treats us very well. They all just want to hug and squeeze on Jetty and they comfort Mommy when she needs it. They even offer to order us dinner from Proc's rather than the Hospital cafeteria. When Jetty starts to calm down, they let us take him home. I always feel like apologizing to the other patients in the ER because I think they don't get any attention when we are there.
Our Neurologist has just added another seizure drug to Jetty's arsenal. The drug is Prednisolone which is a steroid. He learned about success from this drug while he was attending a conference in Germany. Jetty was discussed at this conference amongst the best neurologists from around the world. Jetty is now on 4 different seizure drugs.
Our plan is to start Jetty back on the ketogenic diet in April. Our hope is that we can take some of the medicines away if the diet works.
Currently- He can't hold his head up on his own for more than a few seconds. He moves his legs a lot, which is new. I try and stand him up so he can really work his legs (bending and stepping). A lot of children with severe seizure disorders will tend to have feet or arms that curl inward or outward. We try very hard everyday to work on his hands and feet to prevent this from happening. We noticed his left arm is turned inward a lot and we have ordered a brace to help with this.
He is starting to clear his throat on his own by coughing which is great! He is very irritable at times which is a side effect from the steroid drug. He may also be experiencing some pain from his new teeth coming in.
His sleep schedule is ... well... he doesn't have a sleep schedule. Some days he sleeps only 2 hours, other days he sleeps for 15 hours. It all depends on his seizure activity.
We are hoping that he is able to hold his head up soon so we can put him in all of these toys and chairs that we have for him. His Physical Therapists and Occupational Therapists come every week to work on these goals.
He still hasn't learned to smile or laugh yet, although he occasionally has a seizure which must trigger whatever part of the brain that controls his laughing. We know it is not a real laugh but it sounds so cute and it really puts a smile on his Mother's face even though he is seizing.
He is still getting Elecare formula which continues to work. He is over 14lbs now and is no longer considered to be malnourished. However, he is still 5lbs under what he should be.
These pictures below were all taken within the last week.

I'm playing dead so that Daddy lets his guard down on that ice cream.

I've soaked, scrubbed, rinsed and pooped... that should do it.

Hey... You want to grab me that towel over there?

Daddy put me in this swing when Mommy wasn't home. I don't know what to think of it. Mommy says I'm not big enough yet. I do think it tastes good.

Jetty's trip to Ohio

Jetty and Sue

Tom and Maggie really dig me.

Jetty's cousin Emily helped feed me.

It was Aunt Leslie's Birthday but I stole the show.

January Pictures

Jetty and Humpty in their crib.

Jetty's Aunt Maryanne came to visit Jetty

Now this is how you watch football!
Please take my foot out of the salsa Daddy.

Jetty's new chair

Kerri, Jetty's Occupational Therapist, is working with Jetty's neck muscles.

My Cousin Mackenzie made me a snowflake.

Catching some Z's on da knees.

It may be cold out but I've got to get out of this house!

Jetty had a GREAT Christmas and was spoiled with gifts. He had asked Santa for some much needed button down clothing (easy access for his tube) as well as outfits without feet because he is getting too long! He must have been a good boy because he got lots! And most of them are camo so he is extra excited.

He had to get one more bad day in before 2010 and waited until New Years Eve. But he felt much better on New Years Day. A fresh start for a new year!

Jetty is now 13 lbs and is tolerating his food. GI at Hopkins has an appointment for him on 1/4/10 to check his weight gain to determine if they need to go in and put a j-tube in him which will allow the food to bypass his stomach and go straight to his small intestines. Hopefully they will be pleased with his weight gain. (2 lbs in 2 weeks)

We have learned a lot about ourselves in 2009... our strengths, our weaknesses, our ability to handle stress without having a melt-down... and most importantly, when we find ourselves fretting about normal, everyday drama... we look down at Jetty and remember not to sweat the small stuff. He is lucky everyday he is here and we are even luckier that he is. He hasn't been given the same chance at life as the rest of us and for that... "we don't sweat the small stuff".

Thank you to all of you who continue to follow our story and send us your love and support. We are fortunate to have such wonderful family and friends, both local and far.
Happy New Year and Good Riddance 2009!

Christmas with Jetty

A new sign for Jetty's room.

Aunt Lauren can't get enough of her nephew.

Aunt Leslie came all the way from Ohio just to see me!

My Great-Grandmother "GG"

I' going to give you 10 seconds to take this dumb hat off my head.

Christmas morning at Fleets and Grandma Fleets's house.

I feel like a stupid elf.

Random Pictures

Hey... you... can I bum a light?

These are actually sponges on a stick that help his dry mouth. He really seems to like them.

If you squeeze me any harder, your going to get a nice surprise.

Random Pictures

Now I know what Barney's talking about... this is nice!

Take my word for it, these are better than pillows.