Out of control

We haven't changed anything, but something has happened to John.  He's completely out of control now.  School couldn't handle him today.  3 teachers were watching him and they were getting pinched and bruised, etc. and Yoshie had to eventually go pick him up.
He had a big seizure after getting home which he had to sleep off.  It is sad but it gave everyone a little break.  I think his brain can use the break as well.
We have to try something so we are driving down to Eugene tomorrow to pick up John's first dose of cannabis oil.   We're realistic but also very hopeful that this can help with his seizures and/or recent behavior issues.

Crazy doctor visit

We had a follow up appointment with John's neurologist today.  John was simply crazy.  Unfortunately there is a Taco Bell near the doctor office and he saw it before going in.  So, he fought like mad to get out of the room.  We simply could not calm him down.  Then he said he had to go to the bathroom.  I wasn't sure if it was a trick or for real so I took him to be safe.  He started eating as much of the antibacterial soap that he could.  We fought and made a mess.  I tried to clean up and he escaped and ran all the way outside before I could catch up.
I finally got him back in to the room and it took Yoshie, Dr. Roberts, and I all to try to keep him from escaping.  I think we all got pinched a few times.  Finally Yoshie had to take John out so I could at least talk to Dr. Roberts.  John ran to the bathroom and ate some more soap before Yoshie could get him out.
That was rough for sure, but it's always good when the doctors can see John at his worst.
John continues to have big daily seizures and has these behavior issues on top of that, so we clearly have to continue to try to things.    Next up is another attempt at cannabis.  The Dr. thought this was the logical next step.  Then, John has the opportunity to be in a study for synthetic cannabis.  Not sure if we'll do it or not since it requires 7 nights in the hospital for monitoring.  We don't mind that part, but I simply don't think John could stay that long, especially with an IV.  We're hoping the real stuff works like magic and we can continue to use that!

Another seizure video

Here are the types of seizures that John is suffering from these days.   These can happen once every 2 days, up to 4-5 times in a single day.
http://youtu.be/UwEgNEFQJAo

Ready to go fast!

7th grade

John started the 7th grade today.  He's in the same ISC class as last year with pretty much the same classmates.  We like the teachers there and he seems to usually enjoy going to school.
He rides the bus to school with an aide.   We are going to have his teacher over for dinner soon!

Just the guys

Maya has been in Japan for awhile and Yoshie went for the past few weeks.  So, it's been just John and I for a bit.
John went to Imagine Possibilities every weekday and Yoshie arranged for caregivers to watch him before I got home from work.  We did pretty well.   We took a lot of drives and had our share of fast food and Skyline burger milkshakes!

He did manage to put two holes in our plastic walls.  One of them was from slamming the door:

and the other one was from pushing our old huge TV off of the cabinet:

Here is John wearing something Maya brought back from Tokyo:

VNS Adjustment

In addition to the last VNS adjustment (to rapid cycling) we also increased his Zonisamide dosage.  Neither of these things helped at all so we decided to go back to a slower cycling of the VNS just to save the battery.
So, we got it set back to only going off every 3 minutes, but we had it set higher (2mA).   The VNS remains really the only thing that we sometimes see an improvement with so we are hopeful.   I'm pretty sure we'll never knock out his seizures completely but it would help all of us if he could sleep a little better.
We have another appointment in a month where we are going to discuss bringing him in for a hospital stay to try a few other things and probably get another EEG.
We also learned that John is at the top of the list for a medical trial of a cbd only cannabis pill. http://bit.ly/1gfI9zd

I have mixed feelings about that but we'd almost certainly try it if it truly becomes available.

Strattera

John has been really struggling with seizures at night.  He has seizures every night, usually when coming in and out of deep sleep.  But, for awhile there he was having seizures every 40 seconds or so for hours.  It was horrible.  We traded off staying with him but we were both getting exhausted.
We had his VNS adjusted to a rapid cycling but it didn't help.
In desperation, one night we gave him a pill containing a high-strain of medical marijuana that the dispensary had given me to try out.   I simply couldn't remember what he had said about the strength of this we figured it couldn't hurt at this point to give it to him.
Well, it wiped him out for awhile.  Until suddenly at 2am he is wide awake and giggling like crazy.  Oh man.  When he finally went back to sleep he had his normal run of seizures.  Then, he slept until 5pm the next day, completely missing school!  That was a mistake.
The doctors just don't know what to do and I think they are grasping at straws now, but we were prescribed Strattera, which is an ADHD medicine.  The hope was that it would calm him enough before sleep so he wouldn't have so many seizures.  But, we just couldn't bring ourselves to giving him another mind-altering drug, especially when one of the common side-effects is increased seizures.   So, we got the bottle but have yet to give him any.

Whistler

We took a family trip up north.  We are still hesitant to take John on an airplane but he generally does great in the car so we decided to go check out Whistler, BC since we had never been there.

Of course John had a seizure pretty early on and soaked his car seat.  So, we had to stop and get some plastic bags to cover the seat so we could continue on.

We stopped the first night in North Vancouver.  Here we are getting ready to enjoy some dinner.

We were able to do some shopping and eating at Granville Island before heading up the Sea to Sky highway to Whistler.   Our hotel was right at the base of the ski runs (which are Mtn. bike runs in the summer).  We did a lot of walking around Whistler village and the surrounding areas.   Here is John trying out an ATV. 

Of course no trip would be complete without a big seizure and the hours that it takes to recover.

We rode several gondolas and chairlifts (saw 6 bears!).  

Yoshie and Maya went horseback riding so John and I had fun playing in the sand.

 Not sure what to say about this.  See that little Olympic guy made out of rocks?  Well, there used to be one more.   You can probably guess what happened.

Train ride

Unfortunately, the day started just after we left our house with one of the biggest seizures we've ever seen.  It lasted for minutes and left him exhausted.  We decided to go through with the trip anyway. 

Once we got to the beach he woke up.   He was happy to get on the train and although he was a little subdued, you can see that he loved the ride.

Enjoying the ride

Family bike ride

For the first time EVER, we were able to go take a bike ride with the entire family.
We loaded up the car and headed to the Banks-Vernonia trail.

This trail is dead flat for 5 miles.  We ended up going out 4 miles and turning around.  We didn't wan't to press our luck!   John did great.  

Happy 12th Birthday!

John celebrated his 12th birthday on Friday.   It also happened to be Friday the 13th and a full moon.   The morning was rough with 3 grand-mal seizures.   But, we had a family party for him in the evening and he was fine by then.

Here he is hogging all the pizza:

And here he his blowing out the candles on his cake:

Bike ride

After work today John and I headed out on our first "real" bike ride.  It was only going to be about 5 miles round trip (to my mom's place and back).
The ride started out great.  John was pedaling like a madman and having a blast.   But, just as we got to my mom's place he had a big seizure.   I was able to stop safely but I didn't even bring the magnet to try to stop the seizure.  I also couldn't figure out how to get him off the bike since I have to balance the bike myself.   Once the seizure was complete he puked all over himself.   Thankfully he was able to muster enough energy to get off the bike.  Then, he was completely wasted so we sat on the curb until Yoshie could pick him up.
I learned that I need to bring a change of clothes and the magnet on every ride now.
But, I'm also kind of happy that we proved that a seizure while riding that bike is not dangerous at all.  No other bike would be possible for John to ride.  While it was horrible, it also justified the purchase of this thing and validated all the work that everyone put in to fundraise the money for us to buy it.

The bike has arrived!

We ordered the tandem several weeks ago and I got the call that the bike was ready!
They wanted John there at the shop when we picked it up so that they could properly adjust it for him.   I tried to explain to them that it probably wouldn't work out but we took him just the same.  He hates that shop for some reason so Yoshie just had to keep him out of trouble while I took care of everything with the bike.
Thankfully we got some good weather so we were able to take it for a spin immediately.
The bike is PERFECT.  It's exactly what we needed and hoped for.  It's super stable, even when John is moving all around.   He pedals when he wants to and just rests when he wants to.
As we rode around the neighborhood, he was squealing with joy.
All the neighbors came out and we gave rides to anyone who was willing.

Oh man

Those that know John know that he often decides to pee in the yard or even in a store parking lot.   But, the other day he decided to sit up and pee in the back seat of the car, like it was the most normal thing in the world.  :(    Maya and I yelled at him to stop.  He got angry at me for yelling so he reached up and pinched me really hard to the point that I had a big bruise for days.  
Thankfully he mostly peed in a blanket that was back there.  Needless to say, Yoshie had to steam clean the seat and we left it out to air out for awhile.  I think the smell is pretty is much gone now...

Doctor appointment

John has continued to struggle with lots of seizures, especially at night.   So, we went back to the doctor to see about a new drug or possibly adjusting his VNS again.
This time, we decided to try a new approach with the VNS.  Instead of turning the amperage up again, we decided to try a more rapid cycling.  Now, it gives him a 14 second 1.75mA shock every minute or so.  John had good success with a rapid cycling many years ago so we are hopeful.
Because his night-time seizures come so often we finally gave in and got a prescription for an oral benzodiazepine that we can give just before bed.   These drugs often work and are good for short term usage, but are highly addictive so we don't like to use them.   Onward.

New issue

John has been almost uncontrollable lately.  He's just full of energy.  He also has decided that staying up late is his thing.   Our house is pretty John-proof.  We don't have any pictures on the walls or really any furniture anymore.  Heck, our walls are even plastic now (replaced after he started eating the sheetrock).   So, last night I actually fell asleep trying to get him to bed.  He woke up and was running around.  When, I went to check on him he had found a new way to get in to trouble:

He had broken the cover to pieces, along with another outlet cover.  And, he had pulled the switches out and some wires were loose.  When I touched it it sparked!

So, I spent a late night patching that up so that it wouldn't start our house on fire.  
We just got some "unbreakable covers".  What do you think?

Mr. Battle Ground

Last December, John got selected to be a "Sparrow Child" by Sparrow Clubs USA.   This is an organization that matches up kids in need with schools that are looking to do some fundraising.  John got matched up with Battle Ground high school.
The kids at BGHS have been working hard for months to put together a talent competition for 10 graduating seniors.  I've talked about the other fundraisers in previous posts, but last night was the actual Mr. Battle Ground competition which is what everything has been leading up to.
Wow, is all I can say!
When we got there it was quite a surprise to see that the auditorium seemed to be almost completely full.
John can't sit through a show, so we brought Yumi with us to watch John.  They got to hang out in the locker room in the back where the contestants were doing all their prep for their performances.
Yoshie, Maya, my mom, and I got front row seats for the show.
It was apparent right from the opening dance that a LOT of planning and practicing went in to this show.  It was very entertaining, and the kids had fun showing off their talents and doing group dances.
Just before intermission, they showed a video where each of the contestants talked a little about John.  Then John was introduced to the crowd.  I gave my thank you's and John even did a good job saying "Thank you" in his own way.

During intermission, everyone in the crowd had a chance to vote for their favorite contestant by putting money into boxes that the contestants had made.  Here is one of them:

My mom had a whole handful of money that we put into the boxes of our favorites.
After this, they had a formal wear show where we learned where each of the guys was going to college.  Then they announced the winners of the people's choice and the judges choice.
After that, there were lots of pictures:

It's incredible, but somehow they raised over $6800 for John through the Sparrow Club!!  We never imagined that they would be able to raise that much money.  It kind of left us in shock.

Thank you to all of the students and staff at Battle Ground HS for making this happen.  That was a night to remember!  And, the money raised will be enough for us to purchase the special tandem that we've been eyeing for years.   I'm sure John will love it!

Here is a picture of us with Taylor.  She was the director of the show and was the driving force behind this whole thing.  

Taylor, thank you to you and all of your helpers for making this such an incredible experience for us!

Burgerville Sparrow Club fundraiser

The kids from Battle Ground High School had another fundraiser for the Sparrow Club (and John) at the Burgerville in Battle Ground.  The Mr. Battle Ground contestants actually served the food and kept the place clean.   They had a great crowd and we had a great time meeting up with the team again.

Playing in the snow

IEP

We had John's yearly IEP meeting last week.  This is where we meet with all of his teachers and come up with his goals for the new year.  This was the first IEP at middle school.   We really like his teachers, and John seems to enjoy school.  We really don't set any goals anymore.  I don't think he's ever actually achieved any of his goals anyway.  At this point we want him to learn to function in a classroom environment and have fun.
It was a little sad that they decided to take away speech and occupational therapy "sessions".  Those specialists are now only there for consultation.  No more dedicated time to focus on those things.  And, they pulled John out of PE.   PE was the only class he had where he was in with the regular kids.  He just became too much of a distraction to the class to make it worthwhile.  While I'd love to have John continue with PE, I know that it would be impossible for him to do any of the exercises or follow any rules.  He just isn't capable of understanding those things.
So, John will pretty much remain in his classroom the entire day.

School

We got a message from the teacher today saying that John had a good day, but tried to break the projector and purposely peed on the classroom floor!   Is that a good day??   At least no seizures...

Sparrow Club fundraiser at LimeBerry

Last night, the kids from Battle Ground HS had their first fundraiser for their sparrow (which happens to be John!).   It was held at a neat little yogurt shop in town called LimeBerry.  The whole Mr. Battle Ground team (organizers & contestants) were there from 4pm - 8pm (during finals week!).   We got there around 7pm and the place was PACKED.   John just loves all of the attention he gets:

We had a great evening.  Thanks again to Taylor, Maddie, Hannah, LimeBerry, and all of the Mr. Battle Ground guys (we'll get all your names right eventually!)  

Sparrow Club

I've been wanted to post about this for awhile, but I waited to make sure it was actually going to happen first.
John got selected by Sparrow Clubs to be one of their sparrows!  This is an amazing charity that teams up schools and kids in need.  The kids in the school come up with various ways to fundraise and the money goes to the sparrow child.
As most readers of the blog probably know, John is ridiculously hyperactive.  He desperately needs more outlets for his unlimited energy.  But, with his mental capacity he can't do any organized sports or even individual activities like jogging or riding a bike.  So, we have really struggled to find ways for him to get out and get active SAFELY.   If you've been reading this blog then you know that I found a bike that I think would be perfect for him.   This problem is that this bike is prohibitively expensive for our family.
This is where the Sparrow Club came in.  They understood immediately our unique need and set us up to be adopted by the great kids at Battle Ground high school.   The hope is that the kids can raise enough money to help us purchase that bike.
The experience so far has been nothing short of amazing.  The representatives from the Sparrow Club have been great and the students at Battle Ground have been so friendly and helpful.  It is quite humbling that they would do this for us.

Here is John's Sparrow Club page:
http://www.sparrowclubs.org/sparrows/john_hopper

And, check out this video that the Sparrow Clubs put together:
https://www.youtube.com/watch?v=kNdSF_Vsnwo


Now for the fun part.   Battle Ground High School has a competition each year where one of the senior men gets selected as "Mr. Battle Ground".  The guys have to do dances, talents, etc. at an assembly and the build-up includes charity events such as car washes, yard work, and frozen yogurt night.   They have incorporated this tradition at BG High with fundraising for the Sparrow Clubs.  Awesome.

Yoshie, John, and I were fortunate enough to be able to go up to Battle Ground yesterday and meet Taylor (coordinator extraordinaire) and her planning team, as well as all of the Mr. BG contestants and many of their parents.   And they were all able to see John (who was his typical rambunctious self) and hear a little of his story.
We are looking forward to going up many more times in the leadup to Mr. Battle Ground!

Bloody nose

It's just a typical bloody nose, but when Yoshie first saw him I think she got a little freaked out:

School

Since John started at his new school in September he has not had a single grand-mal seizure while in class, as most of his big seizures have been at night.   That changed earlier this week when he had a 2 minute seizure during class.    The teacher called me and he was OK with John sleeping it off at school.  So, John slept for a few hours and woke up feeling pretty good again and was able to ride the bus home as usual.
Of course we hate for John to have any seizures, but it's kind of a good thing that the school gets to experience it.   It's one thing to explain a seizure and talk about how to handle it, but it can still be a bit overwhelming until you are used to it.   So, now that they went through it I think they will be more comfortable going forward.    And, we are really happy that they handled it so well.
John continues to enjoy school for the most part.   We don't have any more of those battles to get him on the bus like we used to.
We get occasional calls from the school when they have to use some sort of restraint with John.  It's required by law to call us.  But, it's kind of a joke.  Of course you have to use restraint with John!  That is just part of normal everyday life with a kid that can't communicate effectively.  If he doesn't want to go inside, or decides he is going to go out in the hall there really isn't anything you can do to stop him from trying, outside of using physical restraint.    That law certainly wasn't meant for kids like John.