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!

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.

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.

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.

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...

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

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.

The week of annoying and uesless appointments

On Tuesday of this week we saw the neurologist.

You know you are in for a really really long wait when the office ladies bring out a gift card to the coffee shop across the street and tell you to go get yourself a coffee.

When we finally get into a room...1.5 hours after our appointment is to start...the nurse comes in and says "I've never seen you before, have I?" Ummm, yeah you have. "Your last appointment was in December?" No, we have been here since then. And then proceeds to stare at the computer while asking questions and then not really listening to the answers and over simplifying the replies so she won't have to type as much.

Then finally (2 hours after our appointment was supposed to be)the doctor comes in reeking of BO, and wearing the LOUDEST shirt I have ever seen in my life. And then he proceeds to stare at the computer screen while asking questions and typing. And seeing that he is now on baclofen (which J is taking for retching, NOT tone as he is hypotonic) he remarks how loose he is. Yeah.

The best part was as we were checking out the doctor handed me the notes for the appointment (since they are now computerized they can just print them out). I stuck them in my bag and did not look at them until the next day. When I did look at them the first thing I noticed was his diagnosis: "Epilepsy--in remission". Huh? Then I noticed the follow up was recommended for 12 months even though he had told me 5 months. Then I saw "recommendation: follow up with psychologist" WHAT!???

They had given me the completely wrong person's records!! Needless to say I am looking for a new neurologist. Anyone know a good one?


Today we traveled to Milwaukee to see the GI. We saw him in the regular GI clinic and not the motility clinic as we usually do so we did not have our usual nurse.

We talked about the baclofen and how the pain doc was now aggressively raising the dose (even though the GI had rx'ed it originally) so we could see if it was going to work rather that just sitting around doing nothing. It does not seem to be doing much for him if anything, and it has definitely caused him to be tired and lethargic a lot of the time as well as him not being able to use his hands as well as he used to and has less head control. So basically med does not work and causes other problems. But he did not seem to understand what my concerns were.

Again he told me that after baclofen, he had no other options other than surgical and he does not recommend those at this time. He does recommend going to the drooling clinic to see if getting his secretions more under control would help at all.

Then we talked about his bile output which is still a lot and dark green and causes his poops to change consistency and color too. He did not have any thoughts/comments on this, but did feel his belly to see if things were backing up. I need to tell him every time that Jackson has only watery poops.

Commented on how his weight was a little high for someone with severe disabilities. Yes, we are aware of this...but he is only getting 750 calories a day and I am not going to cut it more.

So now he is recommending we go in every 6 months (after having been seen every month!) and he is just going to be managing his tube and acid medicine (which I don't even know why he is taking this as ph probes/scopes/biopsies were normal and it has not been helping the slightest bit anyway!) So nothing has been solved...we still have all the same problems...and he wants to see us only every 6 months.

I am feeling a little bit down after this appointment. It seems like this is yet another doctor pushing Jackson's problems off on other doctors because they don't know what to do.

Luckily, the pain doc seems like a man with a plan. Hopefully he will be willing to keep trying.

What's happening...

Jackson had his first week of summer school, which I guess they are calling "camp" this year. Had a little snafu with the bus on the first day though. When the bus showed up I bet you will never guess who was driving it...yep, the very same aide that caused him to choke. Needless to say we told her to keep on driving. It got worked out quickly though, and Jackson did take the bus home that day.

The nurse has been working out well, she already knew Jackson from school so I feel much better about the whole bus situation.

The big problem this week was there had been no air conditioning on the bus. Because Jackson has an autonomic dysfunction, he is required to have it and it is on his IEP. He can get overheated so fast, kind of scary really. We have been told that the problem should be solved this week. They say they are having a smaller van (with AC) come to pick him up on Monday.

Maybe this will be the end of our bus problems? For a little while anyway?


We have a busy week next week appointment-wise. Neurologist on Tuesday (here) and GI on Friday (Milwaukee).

Pain clinic appointment, update on bus situation, and last day of school pics

Pain Clinic:

I asked Lee to go with me to this appointment. He has really never been to any of J's appointments before, but I thought this was a really important one so he went with us. It was nice also not to have to drive the whole way there and back by myself.

I thought it was a really good appointment. It is so nice to hear "we can try a,b,c,d,e" instead of "we are out of options." We met with the doctor, nurse, and psychologist. We had sent them records that they just got about 10 minutes before we got there so they were not able to go through them before hand. They had watched the video that I had made for the GI (he passed it on to them) and he had a lot of questions about that, and his history, how does he show he has pain, and the meds he had tried in the past, pain triggers, and what can help his pain, what kinds of things he enjoys. He talked a lot about how some of the medicines we had tried in the past were not dosed as aggressively as he would have liked and that we likely would revisit some of those meds and try higher dosages. He called J's list of past meds "wicked".

The doctor and the nurse then took Jackson to examine him while Lee and I spoke with the psychologist. They said they were really impressed with how well he was cared for (no contractures, good social skills, nice tube site, etc). I guess they got a little too close to his mouth and he started bubbling up, but they were good and took our advice and started flapping his arms around (sounds crazy but it helps)and he started to feel better.

So we have a plan now, which is nice. First, we are starting to increase his baclofen at a quicker rate. The GI was really really conservative with it (glad I wasn't the only one who thought so!) so we are going to go up 3 mg every 3 days until we get to 24 mg/day. We are on 6 mg per day now. If it sedates him too much or makes him too floppy we will either camp out at that dose for a while or back off to the previous dose.

At the same time, he is going to talk to Dr. Li (CVS guy) about how to start him on a high dose of zofran without a central line since his only knows how to do it on kids with a line. We have tried zofran before, but never in high doses. He mentioned that our insurance may deny it because it is super expensive but they will fight it.

If the baclofen does not help, then we will try to raise the lyrica. He said he felt there was quite a ways we could go up on that.

If that doesn't help, we can try klonopin. And then we can revisit neurontin on much higher doses. They are not going to try any more tricyclics with him because of the side effects that J has but he mentioned there is a different kind of antidepressant that he can try if all the other stuff does not work.

We will go back in a month. (Hopefully we can start to coordinate this with GI appointments so we can make one trip instead of 2 trips a month to Milwaukee.) I am just thrilled to have someone doing SOMETHING!!!!!


Bus Update:

I asked the principal for Jackson to have a nurse riding on the bus with him. He agreed to put J on a route with a nurse beginning Tuesday, the first day of summer session. We are happy with this solution and Jackson will now be riding the bus both to and from school. Hopefully there will not be any more issues with the bus!

Jackson is fine. Aside from the marks that you can still see on his face (nearly a week later!), you would never know anything happened.


Pics from last day of school:

They always have pony rides and a petting zoo on the last day for the kids. Jackson said he wanted to have a pony ride. I did not think he would like it (too hot, too smelly, too jerky) and he didn't...but I think it's cool he wanted to try!

He looks pretty happy here, but the pony had not started moving yet. His PE teacher and his PT are holding him up.


This is his "I am going to barf soon unless you do something quickly" face.


Here you can see the whole pony.

We had a really nice day Saturday!

Daddy took the day off work just so we could all do something together as a family. We decided that we would go out to lunch and then downtown to see the Cool Globes exhibit. The weather was perfect...hot sun, cool breeze, and the lake was a beautiful aquamarine color that we had not seen before. The globes were really fun too.

If you would like to see pictures of our day you can go here. Notice Jackson's new sun canopy on his wheelchair. I made it with PVC pipes and sunbrella fabric. It works pretty well.