Wednesday, February 15, 2012

Trying it out - an update

We're a week into the night time trial of baclofen.  When you're as tired as we were, the irrational hope was that the effect would be immediate.  The first night of the trial, there was no difference.  Will woke up 7 times that night.  We were miserable and a little down on the whole thing.  You'd think that after so many ups and downs during the past 5 years, we wouldn't expect anything to have instantaneous gratification.  But I think we're always hoping for it.  Totally illogical.

The second night was a different story.  Will didn't wake up.  Not once.  His muscles weren't tight.  He didn't seem to care if he was on his side or on his back.  He finally just slept.  Like he hasn't since he was a year old.

This trend continued.  Over the next couple of nights, Will woke up once per night.  Typically around 1a, just needing to be adjusted.  Once per night is tolerable.  Once per night is a whole lot better than 7.

Today I had to wake Will up.  When I went into his room, he was fast asleep.  Slow breathing.  He didn't jump when I turned off the sound machine.  He was asleep on his belly.  Arms relaxed and up by his head.  Loose.  Rested.  Amazing.

Will has been waking up happy.  Nate and I have been waking up happy.  Luke has been sleeping in his room, restfully, and waking up without dark circles under his eyes.  Every day since the second day of the trial, we have gotten an amazing report from Will's teachers.  Will has been having great, restful nights which have led to the return of the happy daytime Will we have so dearly missed.  Giggly Will is the best.

There is a possibility that Will will develop a tolerance to the baclofen, and we'll need to increase the dosage.  But now that we know that he was having muscle spasms that were waking him up and causing everyone such misery, it is good to know that we have an effective medication to combat it.  Thankfully there are no drug interactions with any of his other medications!

We're all feeling pretty good.  Sleeping is awesome!  Now let's hope I didn't just jinx us...

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