Josiah is beating himself up again.  He’s not sleeping.  He’s refusing to eat much.  He’s having a difficult time this week.  It’s reminicent of the way he was behaving in August of 2015, right before he ended up spending 1 week at UTMB, then 10 weeks at Health Bridge Children’s Hospital.

Monday he had some mild sedation for a GI procedure called an anorectal manometry to check his sphincter muscles.  Everything was normal.  No need to see that specialist again until December, we were told.  I’m not so sure.

Tuesday he started sliding down a slippery slope.  Tuesday was also the very first night we had our 1 – 6 am caregiver.  Josiah started his happy day at 2 am, bouncing wildly at 6 am when I got up. The caregiver worked last night also. (God bless that woman and thank you Jesus for sending her!) He was up by 1:30 and now 9 hours later, showing no signs up being tired.

He is however attacking himself.  His left ear is turning purple and starting to swell from the repeateded punches. He has begun to pull his own hair, hard.  He screamed most of the morning with tears streaming down his face as he attacked himself and us.

He’s lost over 2 lbs in one day.  He is skipping meals, something Josiah rarely does.

He’s had a runny nose for a couple of days so a congestion headache is plausible.  We’ve given him otc medications for pain should it be a simple headache.  And yet, here we are again, back to the drawing board.

I left a message with the GI nurse, hoping to hear back asap.  We’ve contimplated getting him to the ER but after an extremely difficult morning, he’s just beginning to settle down.  Maybe the pain meds have begun to kick in?

The behavior team will be here in less than 30 minutes.  They evaluated Josiah last week on a good day, took lots of information from one of his caregivers and me and watched the boy in action. Today they are bringing the plan.

You want to bet by the time they get here he will be sleeping?  His swollen purple ear will be face down on the pillow, his tear stained cheeks will be dry, his hands will no longer be ripping out fistfulls of hair and all will look right with the world.

It’s just an illusion.  Josiah is in some kind of pain and does not have the ability to speak so we are grasping at straws trying to figure it all out.  It’s been going on way too long.  Something has to give.

This morning I changed my Facebook cover.

Just call us Fred and Ginger.  Rick and I are getting to be pretty incredible dancers.