10/19/04

We finally got a scale from the hospital. We had the hardest time trying to locate one that we could rent, but the hospital called yesterday and said they had one for us to borrow. He's still at the same weight as last week. We have his first appointment at the pulmonologist on Thursday and also with the nutritionist.
His SATS have been dropping into the 60% but then will bounce back up with help of oxygen. It seems he has to have more and more oxygen lately, or maybe it has always been this way I'm just noticing it more.
It's hard for me to think that he has any mental disability because he is so alert and interactive with others. Last night we were eating dinner and put him in the bouncing seat on top of the table. He watched everyone so intently and enjoyed being a part of dinner. Ryan and James were play fighting with swords and laughing and Cass was getting a kick out of the two of them. He looked as if he couldn't wait until he was big enough to play with them. He has this toy that when he kicks it it plays music, lights up, and parts of it spins. He loves it and is entertained for a while. It just seems that he is okay. He kicks the toy to make it spin over and over and reaches for the rings, he puts his hands together, he sucks on his thumb and grabs his ear while he sucks on his thumb, he seems to be doing normal things that he should be doing. We'll see, I guess, what his disabilities are when we meet with the genetics specialist.
We're still dealing with ways how to pay for the help he needs. I know eventually the insurance wants to cut out the home nursing care, hopefully it won't be anytime soon.
Things are getting back to some-what normal. We carved pumpkins with Lexi and James on Saturday and they really enjoyed that. They're getting excited for Halloween to come. James wants to be Captain Jack Sparrow from Pirates of the Caribbean and Lexi wants to be Dorothy from the Wizard of Oz. They love to dress up, but even more they love to eat candy. They helped me decorate the front door and loved it.
I better go feed the kids. I'll write more later. --:)