After weeks in the hospital and plenty of unplanned time, we asked for a schedule for Josiah. We asked for one because it was apparent there was no clear cut plan for his time.  All day, every day, he was permitted to lay in bed.

It was fine with me initially.  When they were tweaking medications Josiah clearly was not ‘himself’. He would not have willingly complied with much of anything at that point. But once we started seeing glimpses of our boy back, it seemed appropriate to change things up a bit.

We talked to the psychologist at the hospital and reminded her their website states each patient has 6-8 hours of individualized, scheduled activities and therapies per day.

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Can you guess what that is? Josiah’s food, while at the hospital is often challenging to identify.  It is chopped in such tiny pieces, I have difficulty figuring it out.

The speech therapist there suggested Josiah has oral dysphagia.  Dysphagia means trouble with eating or swallowing. I’m no expert, but this boy has rarely had trouble with eating.  He eats just about everything and anything we put in front of him.  He eats massive quantities of food at every sitting.  He appears to be swallowing it all just fine.

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For more years than I can remember, Josiah has sucked on his hands.  It started when he very young and has progressively gotten worse. What was once a minor annoyance has now become a major frustration.  Those hands touch everything before being shoved in his mouth. Then they touch his face and his hair.  Sometimes he looks like he’s just gotten out of the shower, his hair is so wet.

When he reaches out to grab your hand, or push you away, it’s almost always with soggy fingers. We’ve tried redirecting him and distracting him.  We’ve tried offering other things for Josiah to chew on. A few days after he was hospitalized I bought him 2 dog toys and a baby teething necklace, all of which he promptly shoved in the drawer.

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These happen to be the mini blinds at the hospital, but the ones from home look very similar. What is it with destroying things? Why does Josiah leave a path of destruction in his wake?

Over the years he has trashed more things than I can count; TV’s, end tables, lamps, plates, cups, chairs, toys, books, Willow Tree angels, computers, iPads, toys, clothes, you name it.  I’m sure I’m forgetting some things.  Quite honestly, it doesn’t even phase me anymore.  It’s almost expected, as if it’s absolutely certain it will happen, it’s just a matter of time.  Read more…

The last couple of days Josiah has seemed so much more like himself. He allows us to get close and pulls us in for hugs. He smiles sometimes. He even giggled a few times yesterday.  All of these are great indicators he may be closer to being discharged.

The primary goals are for him to be eating well, sleeping through the night and showing little to no signs of aggression before he can come home. He’s eating really well. We’ve been told he’s sleeping well, but just learned he’s recently starting his happy day at 2:30 or 3 am. Not good. There are still some signs of aggression but comparatively speaking they are mild. Read more…