Saturday, September 22, 2007

Little bus snafu

Jackson's bus nurse called in sick on Friday. I had a doctor's appointment and could not take him to school. I debated if I should just take him with me to the doctor's and have him miss school, but decided to send him on the bus anyway. The class nurse called while he was at school and told Lee that since we now have doctor's orders that he needs a nurse on the bus, he is not allowed to ride the bus without one. They will not provide a substitute nurse unless they have advanced notice that she will be out.

The thing is, he does not actually need a nurse. He just needs someone who isn't a flipping moron to watch him. But it's kind of hard to get a doctor to write an order for that!

They did allow him to ride the bus home because I could not get there in time and I had the van with me.

I guess I will get the doctor to rewrite the orders to say that he can ride without a nurse in a pinch but not on a regular basis.

Thursday, September 20, 2007

I suppose I should update...

Time sure flies, huh?

bgh bggggggggggggggggggggggggggbbgggggggggggg n <----------message from Jackson

Jackson is liking school again this year. The school is taking their annual field trip to the zoo next week and Lee is going to come with us so that should be fun! Things are working out well with the nurse on the bus. And they actually managed to get an air conditioned school bus for him just in time for our big heat wave.

I am a little bit frustrated with his "talker" as we are calling it now. The school district has a goofy rule that kids are not allowed to have anything mounted to their wheelchair on the bus because they say it is a safety hazard. They originally wanted me to take the mount off and send it in some sort of bag separately on the bus. Well he already takes a large backpack full of orthotics, his feeding pump bag, plus now his talker in the carrying case. The mount is very large and heavy, and sending it in daily is not an option. Because we have to take it off and put it back on everyday, he is not really getting the practice on it that he needs to be able to use it proficiently.

Anyway, his new speech therapist (who I like quite well so far) called the district's assisitve tech department and we met with them on Wednesday so that they can get him a communicator mount and headswitch mount for school. Hopefully they can do that soon. Plus the lady said she would find out who I can complain to about the stupid bus rule.


Medically Jackson is about the same. We started and stopped yet another med from the pain clinic (celexa). We stopped it because Jackson seemed to be agitated on it, he'd been having some sleeping issues and also grinding his teeth ALL THE TIME. We may be starting soon on some high dose zofran to see if that makes a difference, although we hear that insurance may give us some flack about covering it since it is so expensive.

The new neurologist has raised his keppra because when we had labs drawn his levels were lower than they like to see. We are supposed to go for more labs to make sure his levels are right on this dose, but it has to be drawn 1st thing in the AM before medicine and that would mean he would be missing school. We might be able to go on Saturday though, I will have to call and see.

Also, he is going to have a new video EEG done on Oct. 24th. He will be inpatient for at least 1 day, but possibly 2 for this. I have been noticing very few seizures recently, I think maybe only one in the last few weeks. It is nice to have a neuro that actually does something (aside from frustrating me, that is!), but it's a shame that we have to go so far.

And finally, we had his saliva management clinic appointment this week too. They feel he has done all the meds so then our options are either botox or surgery. I think we are going to go ahead and try the botox, just because it may help his GI issues some. Definitely worth a try for sure.


Ok, saving the best news for last here. Are you ready? Hope you are sitting down!

The vaccine case is coming to an end! Lee and I decided we were tired of fighting about what amounted to (in the large picture) a very little bit of money so we quit. Now there has to be a hearing so the Special Master can approve everything and about 30-40 days later we will have money. Woohoooooooooo!!! I can hardly believe it!

Thursday, September 6, 2007

It's been a while and Jackson's been busy

Jackson finally got his Dynavox Mighty Mo communication device last week. We have been doing some experimenting with it trying to figure out the best way to set it up for him. The problem is that with his huge motor issues, he can only use 1 or 2 buttons directly with his hand. The device also has scanning so he can access it with a switch, but it can take a long time to get to the button you want to select with this method, and Jackson does not have the patience for it. I don't blame him, I wouldn't have much patience for that either. But we are working on it.

Also, Jackson started back to school this week. He has a new classroom, new teacher, and all new therapists, so it's a lot of new stuff to get used to. He seems to be enjoying it though.