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.