Sunday, August 26, 2007

New video...check it out!

There is a new video in Jackson's photo gallery. Check it out here. It is of Jackson using his head switch to work a computer program that reads books to him. He is really enjoying the first book and then you can see him pick a different book when the first is done. I was so impressed at how patient he was to wait for the very last book!

Monday, August 20, 2007

So we were sitting around this afternoon

listening to music as we often are. I was watching Jackson listen. I don't think there are many people in the world that you can say that about, but Jackson listens so intently that you can actually see it in his face.

We were listening to this song where the singer says "everybody say hi" and a kid says "hi" and then he says "everybody say hi" again and the kid says "hi" again and then he says "hi" and the kid repeats it a couple more times. (A very annoying song, it will get stuck in your head in a millisecond...song 7 from this CD if you are wondering.) Anyway, I was looking at Jackson listening and he would open his mouth every time the kid said hi and then eventually he actually said hi in exactly the right part of the song. What a sweet moment to witness.

Sunday, August 19, 2007

This week in review

Tuesday we went to Milwaukee for Jackson's pain clinic appointment. He is on a new med now, clonidine. It is a very small amount and so far it has only been 2 days, but I don't think it is working out. He has not been his usually happy social self, not necessarily sleepier though. I think I am going to stop it and call Monday to let them know.

Friday we went to visit my friend Angie in Indiana. She has 5 adorable kids including 6 month old twin girls. Here's a picture of Jackson and the girls getting acquainted.


Saturday we went to a dinner party with 4 couples and 3 kids. Jackson was less than thrilled at having to socialize two days in a row. So today we are just having a quiet day at home.

Saturday, August 11, 2007

G tube feeding

Jackson has a GJ feeding tube. GJ stands for gastric-jejunal, gastric being the stomach and jejunal is the small intestines. His tube has 3 ports... one is the gastric port which goes directly into the stomach, the second is the jejunal port which goes through the stomach and ends up in the small intestines, and the third port is the balloon that hold the tube in place when it is filled with water. It is a low profile button rather than a long tube, so it is easily hidden when not in use.

Here is a picture of it.

The port on the left is the gastric, the port on top is the jejunal port (it has an extension tube attached in this pic), and the port on the right is the balloon port. We keep a piece of gauze under it partly to cushion his skin from the button rubbing on it and partly to absorb any moisture.

Jackson originally had a G-tube placed but because of his vomiting the docs decided it would be better to feed him into his intestines so he would be able to get all his nutrition and the GJ was placed instead. So for over 2 years now we have been feeding him into his J port.

I decided that since his stomach was always full of bile anyway, we might as well try some feeds directly in the stomach. I was very surprised at how well Jackson has been doing with it. We have built up and now he takes all of his daytime nutrition and fluids through his G port! He still takes his night feeds by J tube, and we use the G port to drain his stomach while he sleeps.

Saturday, August 4, 2007

Dentist Appointment

We went to the non-wheelchair accessible special needs dentist yesterday (although they say that within a year the office will be moving to a new accessible location).

It went very well considering everything Jackson has going on (grinding, vomiting, oral defensiveness, etc). Even though we do not use toothpaste with him (the taste makes him barf) his teeth looked very clean. There was one small area of calculus behind the bottom front teeth. She was able to scrape the calculus and give his teeth a cleaning. There was lots of gagging, but he didn't barf...yay!!

The bad news is that in the somewhat near future he will need crowns on his molars because of his grinding, but it can wait at least until his next appointment in 6 months.

Jackson did some tie-dying!

And now he's got a couple really styling t-shirts! Check it out...

Thursday, August 2, 2007

Back from vacation

We went to visit family in Ohio and then had a few days in Michigan before heading home. Let's just say that Jackson really prefers to stay home. Traveling is pretty hard on him. We did have some fun though.

Here is Jackson with Granny and Uncle Jason


Daddy and Jackson at the U of M botanical gardens


At the Butterfly House