Good therapy day

We actually had a little talk about him trying his best while in therapy before his session. I really wonder how sassy he would be if he could actually talk because he shrugged at me twice while I was talking.

But I guess he listened because he really did great. He has OT and PT together. They usually have him in the Litegait on the trampoline, which to me does not look that fun, because he does not get total body movement...only movement through the legs.

So I asked if there was a way to suspend him over the tramp with more elastic straps so he could bounce, and they figured out a way. He LOVED it and he pushed so good with his legs, and screamed his head off (good screaming). Wish I had gotten a pic of that.

Then they made a ramp so he could push cars off and he did great, here he is. Sorry about the cell phone quality pic!

Some stuff

Jackson had his last day of "camp" on Thursday. I think he will be a little sad when he realizes that he can't go to school for a while...he really enjoys it. I'm trying to think of some interesting stuff to do while he is home.

He came off the baclofen, but then he started having some worse days. So we started him back on a smaller dose of it to see if it will help. So far it hasn't.

We had a really nice day Friday. Jackson and I went to a picnic with some ladies that I met on-line. There were 4 families there. It was nice to meet everyone in person finally. Here is our group shot.

A funny little thing

The three of us were out waiting for the school van to come this morning. I had picked one of our marigolds to look at with Jackson but I guess he was not too impressed with it. I asked him if he liked the pretty flower and he just shrugged at me. LOL!

Even though I had seen him shrug before a couple times, it was the first time Lee had seen it. It might seem like a little thing to a lot of people, but for Jackson it is a pretty big deal, especially if you think of all that is involved in a shrug. With this little gesture he really communicated so many different things. He understood what we said to him and that we were asking him a question that required an answer. He was able to actually move his body in a purposeful way, and almost instantly. He was able to understand that a shrug indicates ambivalence and he found that he is able to communicate that ambivalence without anyone having taught him to do that.

I think he is a pretty amazing little guy!

Update on meds and appointments and stuff

We are now tapering OFF the baclofen. Yay! It has not been helping at all, and just makes Jackson too sleepy. We should be totally done with it in 10 days or so. We are also going up on his lyrica, but not by a whole lot. He is now on 75 mg AM and 100mg PM. He will end up taking 75mg 3x/day. It will be 4-6 weeks before we can see what if any effect this has. We have another appointment at the pain clinic next Tuesday.

We also have a drooling clinic appointment at CHW, but this is not until September. It only meets once every other month and they only see 3 patients per clinic. Jackson has really been drooling a lot more since they have been doing the fluid replacement for the high bile output.

Jackson has been enjoying summer school. We finally got the bus situation worked out, mostly. A mini van picks him up as well as one other student. It is a pretty tight squeeze in there...two kids in wheelchairs, a driver, an aide, and the nurse! The only problem we have had was one day the van came really late and I guess she would not put on the AC because she was "almost out of gas". DUH! Of course that day was about 95 too.