Wednesday, March 21, 2012

When Will is in charge of bedtime

Since we increased Will's night time dosage of baclofen (to decrease his limb movement), he's been sleeping a lot better.  I can tell in his attitude, the diminishing bags under Luke's eyes, and my own happier mood that we are all at a much better place and thankful for the night time restful peace it has allowed us.

Bedtime is still 8pm for all the little Slaviks.  We take baths, read books, and tuck everyone in as we always have.  Matt and Luke fall asleep within minutes, as they always have.  Will, on the other hand, now thinks bed time is the time to party.

I don't know if its because he's feeling good or if he's trying to tell us that he needs less sleep at night... but regardless of the reason, Will doesn't give it up until about 9pm now. 

That's an hour of hearing him laugh and make fun noises.  That's an hour of being sure he isn't seizing.  That's an hour of going in and repositioning him so he doesn't roll off the bed in his excitement.  That's an hour of encouraging him to go to sleep.  That's an hour of him smiling as big as be possibly can when you tell him its time to go to sleep.

That smile... tells me that he knows what he's supposed to be doing (sleeping) and indicating that he is aware and consciously telling us that he refuses.  Take that, Mom and Dad.

His new game in the darkness of supposed bedtime is to grab around for the tube which connects his g-tube to the feeding pump.  This is a long rubber tube that connects to the bag of Pediasure, and feeds Will slowly over the course of the night.  Will is very determined to get this tube.  He wiggles around so he can grab at it.  Then he reaches and reaches until he finally grasps it between his fingers.  And then... because he's learned how and likely because of the reaction it gets, he pulls as hard as he can.

The pump goes wild with audible alarms.  When we go in to silence it, Will has the tube wrapped around his tense fist several times.  The tube is completely taut.  And Will is wearing the largest, goofiest smile ever.

He has succeeded in making that pump alarm.  He has succeeded in getting us to come in and visit him again.  He has succeeded in proving to us that he is hilarious. And he's proven that he can master this part of his universe... because he wants to.

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