Monday, December 7, 2015

Hunkered down!

Things have been going really well for Luke.  He's is over a third of the way through kindergarten and loving it!  He is socializing more and more with other kids which is probably my favorite thing that is going on with him.  His teachers, therapists and aides have been working hard to make sure he is successful.  He doesn't like to say hi or bye for some reason and sometimes doesn't respond when he is spoken to.  One thing they've done is when he responds he gets points and after a certain amount of points, he gets to see one of the school's two therapy dogs - that is great for him!!  

Last year one of our big concerns was writing.  Now he's writing and almost - ALMOST - willingly! It's not always his favorite thing to do but he's doing it.  He's still behind in this area but he's gaining skills quickly.  He knows all of the teachers first and last names and I'm not sure that he's NOT calling them by their first and last names.  For Halloween, he decided he wanted to be one of his teachers.  It was really cute!  We're really happy with how things are going for him so far this year.  

His seizures have been popping up about once a month since July.  He has finally topped out of the medicine that has been really working for over a year.  It's still 'working' but not well anymore.  Since he's at the highest dose our doctor wants to put him on we have to figure out what the next step is.  So we're going to be spending a little time at Children's this week.  He's having an extended EEG.  We just got here this morning and he was NOT happy being hooked up but he's doing ok now.  The doctors are going to take him off some of medication this week to trigger a seizure on the EEG.  They will start by reducing some of it and possibly removing some until he has a seizure.  So far Luke has never had a seizure while hooked up to the EEG.  His doctor wants to see where exactly his seizures are triggering from before she decides what is next.  There's a surgical device called a Vagus Nerve Stimulator (VNS) that is the leading choice right now but she has to see his seizures on the EEG before she decides.  So far he's had ice cream, sour patch kids, chocolate milk and is desperately seeking a popsicle!  I'm trying to make it as painless as possible!!!  

Since he's been doing pretty good since the middle of October we're really nervous about 'rocking the boat' right now.  But we don't have a plan once he breaks through again and getting into the EMU (epilepsy monitoring unit) is pretty difficult.  So here we are...Hopefully we'll get some good answers and be able to step in the right direction.  As usual, we have been blessed with an abundance of help with Ben and with my classroom which we're very grateful for.  We'll be hunkered down for the next couple of days enjoying some time together!!  

Working on homework!!!


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