Kindness of strangers

We didn't take John out to eat for many years.  It was mainly because of his never-ending seizures, but also because of his behavior.  Over the years his seizures have decreased and we've just gotten used to the behavior.  We don't even think twice about taking him out anymore.  Of course we take him to "noisy" places and it can sometimes still be a challenge.  Such was the case last night when we took him to a busy local pub.   He was a little more rambunctious than usual and I felt a little sorry for those around us.  He would make a lot of loud noises and bang the wall or table on occasion.  We were struggling a bit to keep him under control while waiting for the food to come (and it took forever - typical of this pub).
Once the food came he ate some of it very quickly and then Yoshie took him to the car to finish eating while I waited around to pay the bill.   The waiter came over and told me that someone had paid the bill for us!   Wow.  That has never happened before.
I went to the front and looked around to see if anyone was looking at me.  I wanted to sincerely thank whoever had done this.  I couldn't pick any one out.  I went and told Yoshie and she came back inside and asked the manager.  Apparently some nice man had just noticed our struggles and wanted to help out.  He just left a message saying "Merry Christmas" to us.   He was already gone and didn't leave his name.
We've been lucky to get a lot of support over the years from family, the medical community, the school system, etc. but never from a perfect stranger.  It kind of shell-shocked us.  Yoshie was in tears.
Thank you to whoever did this for us!  And, we will do the same for others if ever in a similar circumstance.

Getting back to normal

Well, that was a tough couple of weeks.  Ever since John's Thanksgiving adventure night seizures have been relentless.  Yoshie and I traded off sleeping with him to try to keep him safe.  He had several nights with 100+ seizures.
Last week we went to the neurologist to make sure that his VNS was working properly.  It was.  We got it turned up a notch and also got a prescription for a bit more Zonisamide to be given before bed.   Nothing changed for the first few days after this, but on the 3rd night Yoshie said that he was much better:  "Only 40 seizures".  
He only had a half dozen or so the following night.  Then, maybe just 1 small one the last couple of nights.  Yay!   We'll never know if the VNS or the drug made the difference, or if it would have just stopped anyway.
With his seizures all but stopped, his activity level went through the roof.  We got a couple of calls from school and he had to be "restrained" at least once.   He has big mood swings and will fight and pinch when he doesn't get his way.  But, this also seems to be lessening with time.   Things are almost back to normal, or at least as normal as they ever are.

Another broken window

John gets in to these moods where he likes to throw things.  Sometimes it is when he is angry or frustrated, but most of the time it seems completely random.
The other day, for no reason whatsoever, he decided to throw his iPad across the room.   Somehow he managed to hit the little decorative window in our front door.  Yes, it shattered.

We just covered it with some cardboard.  It will be fixed soon.  Our main large front window is still boarded up while we wait for the paperwork to all go through.  I'm sure our neighbors love us!  Our front window has been boarded up since August and now our front door has a broken window.
We did get a nice plexiglass TV cover that goes right over the front of our TV so hopefully that will no longer be an issue.

Night seizures are out of control

Yoshie told me yesterday that John had about 40 seizures that she was aware of on Monday night.   Last night, I put John to sleep and stayed with him.  Once he fell asleep he had a myoclonic seizure (2-3 seconds tightening up, sometimes a little shaking) about every 5 minutes.   It seemed to me that every time he fell in to a deep sleep he would have a seizure that would bring him out of the deep sleep.  This went on non-stop.  He must have had close to 100 seizures throughout the night.   I figured he'd be exhausted this morning but that was not the case.  He seemed fine and the seizures stopped once he woke up.
It's very frustrating.  We haven't seen this much seizure activity in years.  At first I thought maybe he was seizing every time his VNS fired.  This still could be the case, but it didn't seem consistent enough so I'm not sure.  I suppose it is possible that something got messed up with his VNS leads when they removed the bone from his throat.  Unlikely but possible.   I'm not sure what we are going to do, but we can't continue like this.