Oh my goodness!!

I think Jackson just wrote his name!! We were coloring a picture for his Aunt Rachel who is coming in tonight. I help him hold the crayon but he moves it around to color. I try very hard not to move his hand at all so he can color how he wants to (it drives me bonkers when the therapists move his hands around while he is coloring!). So then I asked him if he wants to write his name on it, usually he will smile or make a sound to say yes and I will help him write his name. This time he did not say anything so I just let him keep coloring. BUT, what he did with the blue looked very different than the other colors...I swear that he wrote his name! For sure he wrote a J and an a and then it looks like a k and a c.

Look!!


Sorry Aunt Rachel, I am keeping this one!

A couple appointments this week

First, Jackson had a urologist appointment. This was because about 3 months after he got sick a doctor noticed one testicle was missing. It had been there but apparently went back up. The theory was that when his tube became displaced he was in so much pain that it went back up. Or I guess it could have been during the initial brain injury but no one noticed it was gone until he went back to Children's for the tube displacement.

Well, the urologist looked everywhere for it and could not find it. He said he did feel something very small in there but nothing like a normal testicle. He said it could have been a torsion which means it became twisted and died. But we never noticed any swelling and a torsion is usually accompanied by swelling. However, that was during a time when a lot of life and death stuff was happening so maybe we just missed it. He wants us to get an ultrasound to see if it can be located.

Since everything just got way more complicated than I thought it was going to be, I really wanted to see a pediatric urologist (this guy sees mostly adults) and would feel more comfortable in a good children's hospital rather than the hospital system Jackson's pediatrician referred us to.

Yesterday we had a GI appointment. For once it was a good GI appointment, the GI is usually not very helpful at all and we are probably going to get a new one. This was our first appointment with him in about 6 months. We told him that we decided to start feeding Jackson through the G-tube and that he is doing very well with it for the most part. We also told him that we would like to start moving toward a more food-based diet for Jackson rather than just formula. I have done a lot of research on this and believe it will be much better for him. With just the small amount of baby food he now gets with his formula he has improved a lot.

We met with the dietitian about our ideas for this and told her what we needed from this diet: vegetarian but dairy is ok, about 800 calories (because Jackson barely moves he can gain and grow on very little), as low volume as possible, and must go through the pump. She is looking over what we brought in and running it through her nutrition software to make sure it will provide all the micro nutrients needed and she is going to call us back next week. Then when we get our Vitamix blender (we are waiting for the settlement for that) we will be all set to start.

We need a very good commercial blender like a Vitamix for this because everything has to be ground very fine to fit through the tube, but especially so if we are sending it through the pump. A normal blender would not grind everything finely enough and the motor would burn out very quickly. The Vitamix is very expensive but they do have a program where families can get refurbished blenders for half the cost if they are using them for medical purposes.

Our guy is now 51.5 lbs and 3'8.5" tall. His BMI is improving since he is getting taller but not gaining much weight.

We also asked him about the testicle situation and he said he should skip the urologist and go straight to a surgeon because wherever the testicle went he is probably going to need a surgery anyway. So he gave us the name and number of a surgeon there at CHW who I will call soon.

Some art to share

Yesterday Jackson and I busted out the watercolors! We made 2 paintings. One is for Grandpa Chuck who is recovering from surgery and one is for Great-Grandma Kate who is in the nursing unit at her senior home because of troubles with her legs. Jackson needs help holding onto the paintbrush, but other than that does the painting himself. I think they are beautiful paintings!

Physiatrist appointment and really cute video

Jackson had an appointment with his physiatrist a few weeks ago, I just haven't had time to update yet. We saw her at her main office instead of the hospital we normally see her at because I have major issues with their billing and refuse to go there anymore. Unfortunately, the other office is a much longer drive but whatcha gonna do?

It was a long (as usual) appointment but a good one (as usual).

We talked about his Shriner's appointment and she was kind of shocked that he sat for his spine x-ray also. She had the same thoughts as me about the goofy position contributing to the appearance of scoliosis on the x-ray and thought it would have been better to lie him down. But she said the Dr. he saw is world renown so he should know. Then she looked him over front, sides, and back and even sat him up to look too. And in some positions he looked totally straight but in others she said she could definitely see the curve.

We talked a little bit about his seizures.

We talked about the denials from insurance. I don't think I have blogged about this yet, but lately insurance has been giving us a lot of denials. Even though his dynavox was preapproved, now they are saying they will not pay for it...so they are saying I owe the provider close to $5000. I am not that surprised by it though considering earlier in the year they actually paid for stuff and then asked for their money back! Also, they were denying a new pair of AFOs for Jackson but they did change their minds about that one. She is going to write another letter of medical necessity for the appeal for the dynavox.

We spoke about how the drooling clinic at CHW recommended botox and I asked her if she could do it since we couldn't get it worked out for when we were there. She said yes, she would do it but would like for him to try one more med first. So she gave him an rx for ditropan. She said some of her patients say that works better than robinul (which he takes now).

She is going to write a letter for him to get a vaccine exemption. His vaccines are up to date now but when he turns 5 he will be due for more. Illinois does not have a philosophical exemption; the only exemptions we have are religious and medical. I am not sure what hoops we will have to jump through to get the exemption, but the letter will help.

Even though we think his tube site has been looking a little red and crusty lately, she thought it was so beautiful that she had to call the resident and med student over to check it out!

And I asked her if she knew of any medical insurance advocate services that we could use once we get J's vaccine settlement. It is causing me serious stress dealing with all these denials from insurance, and hopefully an advocate would be able to make the process a little easier.


Saving the best for last! Go check out Jackson's new video in his photo gallery. He has been singing to his music more and more lately. And he just loves to sing to this particular song most of all. I was so happy to finally catch it on video...I had a mouth full of crackers so I had to stop chewing to get it on video so you would not hear the crunching. LOL!

New seizure med

As it stands now, the neurologist is starting Jackson on a medicine called lamictal. The main side effect from this med is a really bad (and sometimes life-threatening!) rash. To avoid this, we are going to taper up very slowly, over 16 weeks. With the slow tapering up there is less than a 1% chance of getting the rash, but it is still something we need to be watching for.

He had his first dose last night, and he slept really badly which is common until he gets used to the dose and it will probably happen each time we increase.

The funny thing is that both the neurologist on the floor last week and the nurse I spoke with this week say it is "a really good medicine", but the way they say it just makes me chuckle. They have such genuine affection in their voices when they talk about it. I have not seen that with any other medication before, and Jackson has been on quite a few.

Halloween pics and more...

Jackson wanted to be a dinosaur for halloween this year. It was definitely not a good wheelchair-sitting costume with the spikes on the back and the tail, but it was what he wanted to be. He wore the costume to therapy on Tuesday and to school on Wednesday, but he decided he would rather stay home than go out to trick-or-treat. They had lots of fun halloween stuff to do at school anyway, and he doesn't eat candy so it was probably a good choice.

When we were at therapy, a kid came up to Jackson and was really checking out his costume. Then he says "Wow! He looks like a real dinosaur!" It was really cute!



Here are a couple pics from the hospital when he was doing his VEEG.


A few of my boy and his doggie...

School Picture

Much better than last year, don't you think?

We are still here

at the hospital doing the VEEG. Here is the story...

When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.

Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.

The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.

Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.

On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.

Coming up this week

This is the week Jackson is having his Video EEG (long term seizure monitoring). Jackson will be inpatient for at least 24 hours but possibly as long as 48 hours. We will be in Milwaukee for this so sadly Daddy can't come visit us while we we be there. If you want to check out where we will be staying click here, click on Special Areas of Interest Tour, and then click on the first little picture at the bottom of the pop-up screen. It will give you a 3-D tour of the unit, you can click on different hotspots in the tour for info.

We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.

A cute picture

Here are Jackson and Dizzy while we were waiting for the school bus last week.

Jackson's appointment at Shriner's

On Monday, Jackson had his long awaited orthopedic appointment at Shriner's Hospital. We wanted to go primarily for them to check out his hips and shoulders. It was a good appointment. He was seen by a team of people: social worker who functions as a care coordinator, nurse, PT, OT, and resident and attending orthopedic surgeons.

He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).

As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.

A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.

The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.

The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.

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.

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.

Another bus incident

First, let me start by saying that Jackson is ok.

When he arrived home after school Friday and the aide was getting him onto the lift, I immediately noticed his wheelchair was in a crazy-horrible position. He was very reclined, but in a way I have never seen before, his head was down by his laterals, not even close to being on the headrest. Any random person off the street would be able to see that it was not right, but the aide did not seem to notice that anything was wrong.

I asked her what happened and she said that he had a little mucous but she had cleaned him up and he was fine. Obviously he was not fine. As the lift came down I could see his face was covered with petechiae and he had barf all over his clothes!!! When the f---ing idiot aide messed with his chair (and you would have to try really really hard to do this) his chest harness came up around his neck and was actually CHOKING him!!!!! And she had absolutely no idea this was happening!!!!

I took him to get checked out and the dr thinks he is ok but I wanted to make sure it was all documented by the doctor too.

The principal talked to the aide and she is so clueless it is scary, she thought we were upset because he still has some stuff on his clothes and his bib was wet. He has called here several times, once offering to try to get J his own full time aide...obviously he wants to cover his ass so he doesn't get sued.

Petechiae

Mark on neck from choking

Family Fun Day at School

Last Friday was Family Fun Day at Jackson's school. Daddy took the morning off to attend, we were so happy he could be there! They gave the students blue school shirts so they all matched. Jackson was happy to see his friend Karuna there. She attends the same class but she goes in the afternoon while Jackson goes in the morning.

The day started out with a parade. The teachers had decorated all the wheelchairs the day before...they looked very patriotic and festive! The parade was led by a marching band and ROTC from a nearby HS. All the people who lived near the school came out to watch and wave as we went by.

Then it was time for the relay races! Since Jackson was the first racer, he had to hurry up and get his gear on and get in the go-bot while the cheerleaders were doing their thing. He drove the go-bot all by himself with a switch! (The guy behind him is steering, not pushing.) He did great!

Then it was Karuna's turn, the second racer in the relay. She also did a wonderful job driving her go-bot!

Jackson won a medal for going so fast in the race! He looks so proud!

There was lots of other fun stuff to do. He got a green frog painted on his hand, and he got to hang out for a little while with some fire fighters.

Unfortunately the day was really hot and sunny so we had to go a little bit early...but it was a fun day for everyone!

Happy birthday Jackson!

Yes, Jackson hit the big 0-4 last week! I think this was the first birthday that he started to get what it was all about. He loved it when we would sing Happy Birthday to him and he also enjoyed opening presents. His Granny came into town to celebrate with us. Here are a couple pics for Jackson's adoring fans.

HBOT Pics

I know a lot of people were curious about exactly what Jackson does for this...so here you go! Basically, he lays in a tube and watches videos for a little over an hour. He doesn't seem to mind it at all. This is what it looks like.

Some good news and a cute picture (or 2)

The good news....insurance is actually paying for the HBOT!!! Absolutely amazing! I sure never expected that and I know the lady who deals with the claims at the hyperbarics place didn't either.

And the pictures...

Jackson is definitely tolerating being close to Dizzy for longer periods of time now that he is not such a spaz. He put up with him for about 5 minutes before he started feeling yucky while I took these pictures . He even looked like he might be enjoying it a little bit.