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.

We've been busy

March has been kind of a crazy month for us. Jackson has had a lot of appointments, and still has more this coming week. We have all been sick and then all got sick again. Here are some of the highlights...

Jackson had a neurologist appointment, that was basically a waste of time. He sees Jackson apparently only for his seizures and tries his best to ignore all other neurologically caused problems that Jackson has...such as his pain and vomiting, which of course we all consider to be number one on the laundry list. After that, I called the GI in Wisconsin to see if he could begin to implement the plan we spoke about on our conference call last month. However, he has changed his mind and now wants to try baclofen instead of one of the other 2 meds we spoke about. The worry with this medication is that it relaxes the muscles and Jackson is already very hypotonic. He also mentioned if the baclofen doesn't work, he wants to try phenobarbitol. I do not want to try this for fear it will be too sedating, and it is something than can be addictive. I was given some good advice from a couple of friends and I am going to get Jackson on a wait list to see the pain team at CHW. Maybe they can do something.

His AFOs still are not right. We go back to the orthotist on Monday and hopefully they can work it out finally. Also, on Monday we are finally getting to try the Mulholland Walkabout gait trainer. I am hoping that it will work out and we can go ahead and order one for use at home. And he is having his assistive tech eval at Easter Seals on Tuesday this week. So we will be one step closer to having a communication device for him.

Jackson is sick again

Lee and I were both under the weather with a pretty yucky virus last week. This week Jackson got it. He has been sick since last Sunday. He has been very lethargic and not very willing to smile. If it's anything like what I had, his little throat is killing him. And of course, any time he gets sick the vomiting gets much much worse.

He slept most of the afternoon yesterday...so by 4:30 this morning he was up and ready to go. He seemed better earlier today, but now he is coughing and gagging every 2-3 minutes. Hopefully tomorrow will be better still.


One more update on the HBOT...we were all set to start at the place in Rockford, but the lady I spoke with apparently did not quote me the correct price. So now, it's going to be about $2000 more dollars than they told me. The 1st place I called is about 45 minutes closer and only an extra $200, so we decided to go there. We are going to start on April 2. Pretty exciting!


And for the most exciting news....we got our van delivered! And construction is going to start on Monday for a temporary ramp for the house. Wooohooo!!

Update: HBOT and more

I have been doing a lot of research and I have found a HBOT place in Rockford, IL. It is more money than the place in Madison would be, but the drive is going to be a lot better. (Just to clarify, most major hospitals have HBO chambers but HBOT for brain injury is considered to be off-label so they will not treat for that and many other conditions.)

We are going to be cashing out my 403b retirement annuity to be able to afford this. It will also allow us to put a decent down payment on a used ramp van and to purchase a portable ramp to get Jackson into the house. The settlement seems still so far off in the distance...our lawyer says that September will probably be the earliest we will see money. Jackson is really getting too heavy (nearly 50 lbs) to carry all over. It's not fair to him or to me, so it's something we just have to do now.

The 2nd increase in lyrica has not seemed to make any difference so far. Here is an interesting article from the Journal of the American Academy of Pediatrics about unexplained chronic pain in kids with severe neuro-impairment...if you are in the mood for a little light reading.

Lyrica update and HBOT progress

I believe the increase in Jackson's lyrica has been helping him a bit in the mornings. He is not quite as gaggy and definitely vomits less. I called today to see if we could raise it a little bit more. We got permission to add another 25mg in the AM to see if that can help him get through the day a little easier. We have a neuro appointment mid-March.

Also, I have been wanting to do HBOT with Jackson for quite a while now. Today I called a local place to get some specific info on pricing and to see what the likelihood that insurance would cover it. They said that BCBS was the worst company by far for reimbursing for HBOT. Unfortunately, though I knew it would be expensive, it was about twice as much as I thought it would be and we just can't do it right now.

I called around to some other places though. I found a place in Madison (about 2 hours away) that is about $50 less per dive and they may be able to get us a grant. I really do not want to drive that far that often (usually at least 40 dives must be done to see progress) but I really want to pursue this as soon as we possibly can.

The saga of the school bus

Tuesday we had the beginning of a fairly big snowstorm. School was still on. We waited for the bus, and waited and waited. We stand in our living room at the front window, no way a bus is going to go by without us seeing.

Kept calling the bus company, were told they are still coming be patient. Meanwhile, we saw a bus that looked like Jackson's bus drive right by without stopping. I figured since our regular driver has been out, the sub must have just missed our house. He will either back up or go around the block...but no.

At 9:10 (school starts at 9) we call the school. The lady I talked to said she isn't sure what happened. She put me on hold to call the aid to see what happened. The aid told her that they had waited outside our house for 5 minutes and then left when no one came out.

Well, there is just no way that is true! We live on a narrow one-way street. It was not plowed yet that morning so no way cars could get by a bus stopped for 5 minutes. Chicago drivers are not known for their patience...they would be honking like crazy. Plus the fact that we were right there watching the whole time.

As you know, Jackson is nonverbal, can barely move, wheelchair-bound, frequently vomits especially in an upright position. Now I am very upset that I have to hand my very disabled child over to this person who I know to have told a lie. Not that I think she would intentionally harm him, but he does need someone to keep a close eye on him and he has no way to tell me if something bad happened on the bus or not.

Anyway, Jackson missed school that day because by the time I could have driven him there myself there would have been only about an hour left of school before he had to get on the bus to go home. He loves school too.

So Wednesday bus service was cancelled due to snow, but I had already decided that I wasn't going to put him on the bus anyway. So I drove him to school and then went to talk to the principal about what happened. He said that he has known this aid for 15 years and would feel comfortable leaving his kids with her. Yeah, but his kids can walk and talk and tell someone if something happens and don't have chronic health issues and need constant supervision. He said he can't switch the buses around. He said he would talk to the aid to get her side of the story the next day (she wasn't in that day) and call me to let me know what she said.

Thursday, I drive him to school again but he takes the bus home because it's a different aid on the way home. I hear from the principal that morning. He says that she says that the bus was out there waiting, maybe not a full 5 minutes but she said they were definitely there. He said he would like it if I could put Jackson on the bus tomorrow and talk with the aid. I don't like that solution very much but OK, I will talk to the aid myself.

Friday when the bus gets here (we see it right away from the living room window...go figure!)we go out to talk to the aid as we put Jackson on the bus. I wrote down my phone number on a piece of paper so she can call me next time the bus is "waiting for 5 minutes" and we don't come out or when the bus is excessively late. But she is totally sullen and has a serious attitude. She just goes on and on about how she has worked there 20 years and would never harm a child, bla bla bla. Ok, lady...I really do not give a s*** about how long you have worked there...are you going to use this phone number the next time you are "waiting" for us or not?(she is always talking on her cell when they pull up so I know she has one) She said she would, but she couldn't call us when the bus was late because she waits for the bus herself (ummm, so when you actually get on the bus maybe you could call us?)and we have a substitute driver so there might be a different driver each day.

The driver who was there said at first that it could have been a different Alltown bus we saw drive by (no, only one Alltown bus goes down our street, the rest are Falcon buses). Then he changed his story and said we should have called the bus company and they can call him and tell him to go back. (We did call the bus company 3 times and were told each time that they were still on their way).

When the bus arrived home on Friday afternoon, the afternoon aid and bus driver were surly toward me too.

I am not satisfied with the way this was handled at all by the school. The principal did nothing to make sure the bus would not leave Jackson behind again. The aid made it all about her, when it should be about getting Jackson to school when he should be at school.

Unfortunately, we feel that it would be best if I drive Jackson to and from school at least for the time being.

Sharing a picture that Jackson colored today

It's a (what else?) monkey! He gets to pick what color he wants to use. Then I help him hold the crayon, and he will move his hand to color. We made an M for monkey and also wrote his name.

Obviously the main JPD site is messed up!

But hopefully some people are still able to find their way over here without the link from the main site. 1&1, the webhost, did something to the site. I am told they are going to return it to it's previous state, but it should have been done already. I'm going to harass them again tonight after Jackson goes to bed.

So anyway, I finally got a hold of the neuro nurse. They are raising Jackson's lyrica by 25mg only at night. They are not maximizing the lyrica at this point. There is still room for another couple steps up on that. It will be a few weeks until we know if it is working. We have a neuro appointment in March so we can talk about it then.

Also, the PPI that we were rxed (generic prilosec) did not go through the tube. So now we are trying this stuff called zegerid which is a powder. It is supposed to be given at least 2 hours after eating and at least 1/2 hour before eating. With Jackson on slow-drip J feeds that could be difficult. So we are going to try it in his G tube and hopefully he will tolerate it ok and not barf it. It has to be given with 20ml water and flushed with another 20ml, which is quite a lot for someone who usually has nothing in there. I am also going to see if I can bump up the rate of his J feeds to make more time to give it though the J.

In other news, the vaccine case is almost almost done. We are still not in agreement over architectural costs and there will be a hearing here in Chicago in March in front of the Special Master to decide this issue. Then it's done. Also we think we have a trustee picked out. We are meeting with them next week.

A new plan

I spoke with Dr. S. on Wednesday. He said that he and Dr. R. had spoken the day before.

First, he and his colleagues were very puzzled by Jackson's reactions to the tricyclics. He said that to have pain in the limbs is very rare with these medications and then to have it in only one leg is pretty much unheard of. That seems to be the way it goes with Jackson.

He said he and Dr. R. believe that seizures could be causing the retching (although the last VEEG we had really did not show that there was any correlation...whatever! ) so the first thing they would like to try is to raise J's keppra to maximum dosage. (Jackson is on 2 seizure meds though and I am kind of hoping they want to raise the lyrica first. I called Dr. R's nurse and asked exactly what were they going to raise...still waiting to hear. Hopefully we will hear today, I would hate to have to wait all weekend!)

So if that doesn't work, we can then decide between 2 options. The first option is to try another tricyclic (aside from the desipramine and the amitriptyline we have already tried).

The other thing we could try is a medication called marinol, which is a cannabis(!) based med used mainly for vomiting and nausea during chemo.

Also, he would like to see Jackson start back on a PPI. He has been on quite a few different PPIs in the past but stopped since they never seemed to do anything for him. Dr. S. said at least it could help to protect his esophagus from damage. He also said it was ok to put the PPI in the J tube, it would still work. I did not know that.

So I am happy that there is a plan in place...although I would be really happy if it was a plan that was actually going to work this time. But at least we are trying something, which is better than trying nothing.


Also, we went to get Jackson's AFOs adjusted today. He needs to be able to lock out his knees so he is able to stand. By design, AFOs are made to prevent people from locking their knees. Last time, the orthotist just took some of the material off the bottom of the heel and that was enough to let him stand better. This time, there was not enough material on the heel so she built up the toe instead. Unfortunately, she could not build it up enough to be effective without making it so big that it won't fit in his shoe...so they are going to be remaking his AFOs.

Got our x-ray

We went Thursday to get the x-ray and the blood test. The x-ray was fine, as I knew it would be. We have not heard about the blood results yet, but I am sure those will also be normal.

Whenever we go to Children's main hospital, I always buy Jackson a balloon on the way out. This time we got a Thomas balloon. It was the first time that Jackson has shown any normal interest in a balloon. In the car on the way home he kept staring at in and even batted at it. At home, he loves to hold on to the ribbon and can actually hold on to it for quite a while. When it is not near him, he will twist and turn so he can look at it.

Here he is with his beloved balloon...