School

A bit of bad news here. Going forward we will no longer be able to take videos of James at school. Apparently, this is because of a school district policy. It’s interesting because this wasn’t a problem in preschool which is part of the same district. We don’t know if this is a new policy or if the policy has always been in place and they are just enforcing it at this new school.

I won’t get into all of the details here, but I will say that we are not happy with the way that district has handled communication between the school and us as parents. Instead of coming directly to us with a complaint or issue, the district talked to the nursing agency first, which then discussed it with James one-on-one nurse, who then told us. It took four days for that communication to make its way back to us. FOUR DAYS! We shouldn’t have to hear about a complaint or issue involving our kid third hand. And it most definitely should not take four days for us to find out about it. If there is an issue or problem, come to us directly, and we will be more than happy to sit down, discuss it, and come up with a solution.

That is all I am going to say about this right now. Hopefully this is behind us, and we can move on. I’ll still try to keep you all updated on James’ progress on school, but there won’t be any visuals in the form of videos. We’re discussing if we should stop with pictures at school as well so that doesn’t become an issue in the future.

VNS Adjustment

A couple of weeks ago Stacy was awoken at around 2:30 am by James letting out a pretty big yelp. As she opened her eyes and focused them on the baby monitor, she saw him lifting and turning his head. When she went in there, his pulse ox was showing that his heart rate was around 130 beats per minute. She rubbed his back a bit which seemed to calm him down. His heart rate got down to 100 beats per minute.

She came back to bed and as soon as her head hit the pillow, he did it again. She got back up, rubbed his back to calm him down, but this time she stayed with him instead of coming right back to bed. And he yelped again. She had made a mental note of what time his previous yelp was, and it was 3 minutes prior to the latest one. It just so happens that his VNS (vagal nerve stimulator) is set to send a pulse to his brain every 3 minutes.

These yelps continued every 3 minutes for about half an hour before he finally stopped. Obviously, there was some correlation between the yelps and the pulse the VNS was sending to his brain. It was weird because he had never done this before and the last time the settings were changed on the VNS was back in April when the neuro changed the frequency of the pulses from 5 minutes down to 3 minutes. It’s also weird that he hasn’t had any further episodes like that since.

James did see the neuro this past week for an adjustment to the VNS. We figured that he would turn the turn the power of the pulse down a little bit, but he instead turned it up. That was about four days ago and still hasn’t had one of those yelping episodes so maybe it was just a freak thing. We don’t know.

Other Random Stuff

James has a pediatric stroke survivor shirt that no longer fits, so one of his monkeys is wearing it now. We don’t think the monkey will outgrow it so we should be able to keep this shirt forever. Or at least until James outgrows his monkeys, which we hope will be never!

The pergola that the Make-a-Wish Foundation is building over our patio is coming along nicely. It should be done soon. I’ll probably create a separate post when it is completed.

Everyone please wish Stacy a very Happy Birthday. She may be another year older, but she’ll always be younger (and better looking) than me. James is very lucky to be able to call her momma, and I am very lucky to have her as my wife.