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.