Playground fall

John went to a special needs camp all last week. We were pretty nervous about sending him, but he seemed to really like it. That is, until Friday. The group was playing at a playground that had a pretty high play structure. Of course John was at the top. Nobody seems to know what happened, but someone mentioned that he was pushed from the top and fell about 12ft down. His head and face hit something on the way down.
They said he was acting "stunned" so they called the paramedics. They put a neck brace on him and drove him to the ER.
Unfortunately I was in an all-day meeting and Yoshie was at the zoo with Maya so we couldn't be reached. They were able to reach my mom who got in touch with my brother who I think called the front office of my work. I finally got called out of the meeting and was able to call the camp director. All she could tell me was that John had a bad fall, was in a neck brace and on a backboard and that I needed to get to the ER ASAP. Scared me to death. And, traffic was horrible. Then, there was construction at the hospital. Three ambulances passed me while I was waiting there. I'm guessing John was in one of them. Thankfully, Yoshie had come back to the car for her phone so I was able to get in touch with her. She actually got to the ER about the same time as the ambulance.
When I got there, they were holding him down and cutting off his clothes. He had a big lump on his head and a bruised face but didn't seem to be in any horrible pain. I think he was a lot more upset about being held in place. They did an x-ray and CT scan. Both of those were fine, thankfully. Soon after that we were sent home. They said he likely had a mild concussion and we just have to watch him carefully for awhile.
His face got a little more swollen on Saturday, but has since gotten much, much better. He also was favoring one arm and his shoulders were crooked. This required another set of x-rays on Monday. Those also looked OK, so we're hoping that it is just some muscle pain that will go away soon.
We did keep him home from camp this week. We're still decided whether or not to send him back next week.

CT Scan:



Looking a little beat up:

Japan trip

The trip to Tokyo went well. I think John had a great time. The flights were tough, but only because he was happy and making a lot of noise. That is a lot better than crying or breaking down out of frustration. He loved all of the trains, the noodles, Disneyland, etc. Overall we had a great trip.

Here are some pics:


Tokyo Disney Sea


Shibuya




Enjoying an ice coffee at McDonalds



Roller coaster at Toshimaen



Anpanman ride


Easting some noodles at a shop in the Ikebukuro train station.



Leaving rainy Portland

Big week

John turned 9 earlier this week. We just had a family party, but he had a great time opening presents, eating cake, and jumping in the inflatable bouncer with his cousins.
Yesterday was his last day of 3rd grade. I think he had a pretty good year. He will be at the same school again next year, although his main teacher will change.
We're off to Tokyo tomorrow. It's anybodies guess how he will do on the long plane flight. He does great on long car drives, so we're hopeful the plane will be the same. But, he can also get very wound up and there is really no way to calm him down. It could be an interesting flight.
As far as seizures go, he has remained very consistent for a long time. He continues to have clusters of small seizures every day and the occasional larger seizure. Learning is the same as always. He continues to learn, but progress is so slow that it is sometimes hard to tell.

Update

The increase in the zonisamide didn't help at all. In fact, his seizures have gotten somewhat worse lately. He's having a lot of small seizure clusters that last 10-15 minutes. And, he's having an occasional bigger seizure that makes him vomit and wears him out for a couple of hours. But, the seizures are once again different and not violent at all. They are obvious to us, but probably not to others unless they are staring right at him.
So, we've lowered the zonisamide back down to 125mg/day and we'll give that a couple of weeks. I suspect we are going to be back on the drug roller coaster soon. Pretty sure Vigabatrin is next. We haven't tried it before, mostly due to a potential permanent side effect having to do with your field of vision. But, the chances of that are small and we have to weigh the potential benefits with the risks, as always.
John has a real issue with not wanting to eat anything in the morning. And, he is totally uncooperative if he doesn't eat. So, he now eats breakfast at school. We tried getting him to eat from the cafeteria but it didn't work out so well. So, he basically eats snacks now for breakfast. Not the most healthy option, but I think parents of similar kids would understand.
We're planning a trip to Japan this summer. John hasn't been on an airplane since he was 1, so it might be a big adventure. Thankfully, in-flight entertainment has come a long ways since then and we have an iPad that we'll load up with movies and games. I think he'll be OK.

Dentist Bill

Who would have expected that getting a tooth pulled would cost over $8500? That is just ridiculous. Our copay is about $1700. Kind of stings, especially considering that it was the dentists fault that we had to end up doing it in the ER instead of in the office with IV sedation.
But, they did a good job and John's front teeth are moving in the right direction. They will never be perfect, but after looking at the picture below just after the surgery I see just how much better it has gotten. I'll post a picture soon.

We had another appointment with the neurologist. We decided to raise his Zonisamide level from 125 to 150mg. His blood work showed the level was pretty low and John has grown a lot since we started this med. We'd like to get rid of the occasional big seizures. I think we can live with the daily head-nods at this point. We also learned that John's VNS is within 9 months of having to be replaced. Man, we thought this one would last 7-8 years. Sure didn't expect it to run out this fast. We talked about just shutting it off and seeing what happens. We have no idea if it is still doing anything.

School reports that John has been getting harder and harder to handle. We don't really know what to do about it. We haven't really seen any change at home. They also say he will eat non-stop all day. It is definately true that you have to keep John well-fed if you want him to be happy. Since he has always refused to eat in the morning before the bus comes, we asked that they feed him breakfast after he gets to school. I hope this will help with some of his behavior issues.

We've been using iProloqueToGo on our iPad for John's communication device. It has been great and is such a nice alternative to the usual bulky devices. Hopefully the school will follow suit at some point.

John is back at PSU for speech twice a week and does well there. And, he enjoys swimming every Saturday.