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.

Jetty has his very own stocking that Mrs. Keen made for him before he was born. It saddens me that she never got to meet him. It saddens me more that Jetty never got to meet her. Since she passed away before Jetty was born, her daughter in law finished her work by stiching his name on it. (Not sure if stiching is the proper word).
Jetty is very excited about Christmas because he has been a good boy this year and you know what that means! ...(He has lots of Grandparents that can't wait to spoil him).

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!