Tuesday, April 23, 2013

Jammin' with friends...

Friday started off a little shaky.  During his video time with his class, Max had a couple of short seizures.  His jerky movements were frustrating him so much that he told me with his talker, "epic pains".  He went on to say "epic" three more times.  This is the first time he's ever said anything with his talker about seizures, and I have to say, it broke my momma heart.   I don't think he's in pain, but I know they frustrate him terribly.

Once we hung up with his class, Steve and I decided to give him a half dose of his "rescue medicine".  I say rescue medicine, because it's the medicine we can give him at home to stop the seizure cycle.  But, it is also prescribed for agitation, which is mostly what was happening on Friday, because of the seizures.

It didn't make him too sleepy, at first.  Which made me hopeful for the afternoon, because Max had a big play time set up with a couple of his classmates.  It's always a balancing act.  I knew if we didn't give him the medicine, he would be very agitated, and probably having short seizures while his friends were here.  Or, we could give him the medicine and he wouldn't be as alert when they got here because he was tired.  So, we went with the medicine.

Max slept for a couple of hours in the afternoon, while I got everything ready for his big jam session.


And although he was very sleepy, Max was awake for all the songs they played together.

Max was on the keys.

And his buddies switched up which instruments they played.  Although, big sis's electric guitar was the favorite to try out.

It was a wonderful racket.  One that left me with a headache for two days...but really it was so special.

When I took the video, I couldn't help but think of 3 little rockers on their own, jamming in the garage, making up their own beats and songs, talking about band names and who should come in on what beat.  And again, there he was, just one of the boys.  

Special thanks to both of these boys' moms for bringing them to Max when he can't get to them.  To their teacher who encourages them to see past the differences to what they have in common.  To his wonderful music therapist Ms. Laura for accommodating everyone's schedule and guiding them all through it.  You are all changing the world, at least our world.  

1 comment:

Elizabeth said...

I am so grateful that you chronicle these important events in your Max's life -- like you said, he and these boys are changing the world!