Little bus snafu

Jackson's bus nurse called in sick on Friday. I had a doctor's appointment and could not take him to school. I debated if I should just take him with me to the doctor's and have him miss school, but decided to send him on the bus anyway. The class nurse called while he was at school and told Lee that since we now have doctor's orders that he needs a nurse on the bus, he is not allowed to ride the bus without one. They will not provide a substitute nurse unless they have advanced notice that she will be out.

The thing is, he does not actually need a nurse. He just needs someone who isn't a flipping moron to watch him. But it's kind of hard to get a doctor to write an order for that!

They did allow him to ride the bus home because I could not get there in time and I had the van with me.

I guess I will get the doctor to rewrite the orders to say that he can ride without a nurse in a pinch but not on a regular basis.

I suppose I should update...

Time sure flies, huh?

bgh bggggggggggggggggggggggggggbbgggggggggggg n <----------message from Jackson

Jackson is liking school again this year. The school is taking their annual field trip to the zoo next week and Lee is going to come with us so that should be fun! Things are working out well with the nurse on the bus. And they actually managed to get an air conditioned school bus for him just in time for our big heat wave.

I am a little bit frustrated with his "talker" as we are calling it now. The school district has a goofy rule that kids are not allowed to have anything mounted to their wheelchair on the bus because they say it is a safety hazard. They originally wanted me to take the mount off and send it in some sort of bag separately on the bus. Well he already takes a large backpack full of orthotics, his feeding pump bag, plus now his talker in the carrying case. The mount is very large and heavy, and sending it in daily is not an option. Because we have to take it off and put it back on everyday, he is not really getting the practice on it that he needs to be able to use it proficiently.

Anyway, his new speech therapist (who I like quite well so far) called the district's assisitve tech department and we met with them on Wednesday so that they can get him a communicator mount and headswitch mount for school. Hopefully they can do that soon. Plus the lady said she would find out who I can complain to about the stupid bus rule.


Medically Jackson is about the same. We started and stopped yet another med from the pain clinic (celexa). We stopped it because Jackson seemed to be agitated on it, he'd been having some sleeping issues and also grinding his teeth ALL THE TIME. We may be starting soon on some high dose zofran to see if that makes a difference, although we hear that insurance may give us some flack about covering it since it is so expensive.

The new neurologist has raised his keppra because when we had labs drawn his levels were lower than they like to see. We are supposed to go for more labs to make sure his levels are right on this dose, but it has to be drawn 1st thing in the AM before medicine and that would mean he would be missing school. We might be able to go on Saturday though, I will have to call and see.

Also, he is going to have a new video EEG done on Oct. 24th. He will be inpatient for at least 1 day, but possibly 2 for this. I have been noticing very few seizures recently, I think maybe only one in the last few weeks. It is nice to have a neuro that actually does something (aside from frustrating me, that is!), but it's a shame that we have to go so far.

And finally, we had his saliva management clinic appointment this week too. They feel he has done all the meds so then our options are either botox or surgery. I think we are going to go ahead and try the botox, just because it may help his GI issues some. Definitely worth a try for sure.


Ok, saving the best news for last here. Are you ready? Hope you are sitting down!

The vaccine case is coming to an end! Lee and I decided we were tired of fighting about what amounted to (in the large picture) a very little bit of money so we quit. Now there has to be a hearing so the Special Master can approve everything and about 30-40 days later we will have money. Woohoooooooooo!!! I can hardly believe it!

It's been a while and Jackson's been busy

Jackson finally got his Dynavox Mighty Mo communication device last week. We have been doing some experimenting with it trying to figure out the best way to set it up for him. The problem is that with his huge motor issues, he can only use 1 or 2 buttons directly with his hand. The device also has scanning so he can access it with a switch, but it can take a long time to get to the button you want to select with this method, and Jackson does not have the patience for it. I don't blame him, I wouldn't have much patience for that either. But we are working on it.

Also, Jackson started back to school this week. He has a new classroom, new teacher, and all new therapists, so it's a lot of new stuff to get used to. He seems to be enjoying it though.

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.