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!
