Went to the zoo today!

As we were walking by the carousel, I stopped and asked them if there was any way Jackson could ride. They said sure, that we could be first on next time, they have a ramp and a special place for wheelchairs to sit. So Jackson got to have his first carousel ride! Unfortunately I did not have my camera on me at the time, but I did take a couple pics with my cell...you can't really tell he is on a carousel though.
Then I saw the tram so I asked them as well. The lady selling the tickets said she wasn't sure, so I asked the driver and they said no problem...so he got to ride the tram too!

Jackson fell asleep on the tram ride and then started to overheat, even though I thought the ride was cool and comfy. So we did not stay too long, he is feeling much better now. We are members though, so we can go back whenever we want...probably wait for a cooler day and bring the wheelchair umbrella. I was very impressed with all the accessibility though!

Good dog!

Dizzy is back from boot camp. He still has learning to do, but he is trying very hard to be a good dog (except when he sees a cat walk by). He has really improved so much! Here is Dizzy "staying" by Jackson's legs.

GI appointment

Dr. S said that basically we are coming to the end of the line with medications we can try. And some of the few meds that are left that may work have some undesirable side effects that make me not even want to try them at all. So we have decided to give the baclofen a shot, even though Jackson is severely hypotonic. The other options are phenobarbital, benzos, botox (endoscopically), or surgical options.

The surgical options he mentioned were fundoplication and gastric bypass. Right now I do not think either of these are worth considering, and I was shocked that he brought up the gastric bypass at all. I can not image us ever consenting to that.

So we decided to have the baclofen compounded a the CHW pharmacy because it is very difficult to find a compounding pharmacy here, and I am firing our current pharmacy anyway. Long story short, the pharmacist needed to speak with the doctor before making the medicine and we left without it. It will be sent to us.

It is a ridiculously (pharmacist's word) small amount of baclofen that we are starting him on so chances are small that it will have any effect--positive or negative--until we do a few increases.

If you haven't seen it

check out the new video on Jackson's site...I am so proud of him!

Also, keep your fingers crossed for us. We are on the road tomorrow to Milwaukee to see the GI. We will probably be starting the oral baclofen. Who knows, maybe this is the thing that will help.

Continuing HBOT and update on gait trainer

Jackson and I did our 9th dive today. Have I noticed a difference yet? Maybe. It is hard to say for sure, but I think I have noticed some little things. Mostly I have noticed his hands opening more and I believe he is having an easier time grasping things. Unfortunately I have not seen any changes GI-wise.

I am having troubles with my ears from the changing pressure during the dives. My right ear is totally blocked right now. Last week, it was my left ear. Hopefully Jackson's ears are less sensitive than mine.

Also he was finally able to get a good trial of the gait trainer during PT. It seemed like it was really pretty good for positioning. I am not sure he liked being in it, but he did have 3 people fussing over him. I think once he figures out how to move it he will like it better. Here is a picture of him in it.

Started HBOT this week

We made our 3rd dive today. It is going well. Jackson's ears seemed to be bothering him, so today they gave him some earplanes ear plugs that seemed to help with the pressure. I go in with him because of the risk of vomiting. He did vomit as he was coming out of the chamber on dive 2, I think because his ears were bothering him. We are doing a series of 40 dives.

In other news, Lee sent Dizzy to boot camp!!! Yes, Dizzy was driving us crazy so we decided to get a professional to work with him. He has been there for about a week and a half, and the changes are amazing. One of the biggest problems was how Dizzy would act with Jackson. He would sometimes lay on Jackson's legs, which is wonderful...but more often, he would get in Jackson's face and start licking him on the face which would cause Jackson to barf.

Today I took Jackson to visit him at boot camp, and he very calmly sat on Jackson's lap in his wheelchair. Jackson got to pet him, and (after he realized that Dizzy was not going to get into his face) really enjoyed being close to his doggie. We are going to do a home visit next week with the trainer so Dizzy knows all the good stuff he has been learning at camp also applies when he gets into the house.

Also, his assistive tech eval went very well, sorry for not updating sooner. They recommended he get the Mighty Mo communicator by Dynavox and a head switch. He really did great with the head switch, it seems like it is much easier for him to operate than a hand switch.