Messing with Utopia

By Sandy on October 6, 2015

Today was my scheduled surgery day. In April I had a total knee replacement of my left knee. This morning I had planned to have my right knee replaced. Obviously, that didn’t happen. When Josiah was admitted to the hospital for a long term stay, it just made sense to postpone it. There is no way I would be able to visit him every day while recovering. There is no way I’d be able to mess with his ‘perfect’ little world while he’s in the hospital, if I were laid up in bed, popping Vicodin.

Messing with his perfect little world is exactly what I’ve been doing lately. Every day I drive nearly an hour to see my boy. Every day I bring something different with me; more clothes, a new balloon, some additional snacks. Today I brought a very detailed schedule.

King of the Castle

By Sandy on October 5, 2015

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…

Josiah’s Joyful Jumpers

By Sandy on October 4, 2015

Yesterday was the 6th annual Buddy Walk for our local Down Syndrome group. Perfect weather, great turnout, fantastic fundraiser. Just one problem, our buddy wasn’t there. While Rick and I donned matching T-shirts and took a leisurely stroll around the park with all the other teams, Josiah’s Joyful Jumpers were not so joyfully missing their favorite jumper.

Josiah has been in the hospital 5 weeks already. I just learned they intend to keep him for 3-4 weeks more. He went in 3 days after school started and may not be home until Halloween. When you think of it like that, it really puts things into perspective. That’s a LONG time. It’s so incredibly hard to have him so far away from home. I do not like this one little bit.

The Great Outdoors

By Sandy on October 3, 2015

It only took a wheelchair, a gait belt (substituting as a seat belt) and a pack of fruit snacks to get this boy out in the sunshine yesterday. I set the timer on my phone to see how long he would make it. 22 minutes and 8 seconds. Not bad. Most of that time Josiah spent on the ground playing with his shiny purple beads. Some of that time he spent perched by the door, waiting and wanting to go back inside. None of that time was spent walking around or climbing the play structure or going down the slides. But it’s progress.

I spent most of that time snapping pictures. It only took 65 attempts to capture a good one. Smiling Josiah

Snack Attack

By Sandy on October 2, 2015

Josiah has a snack drawer in his hospital room, It contains some of his most favorite treats. For nearly 3 weeks, though he knew there were goodies in that drawer, Josiah didn’t much bother with it.

He is a growing teenager; always hungry. Between meals, we offer him cereal bars or some dried mango. We use fruit snacks as motivators to encourage Josiah to walk down the hall or to go outside to the playground. Rick and I dole out the snacks and replenish them as needed. It has worked well to keep them handy in the drawer close to his bed. Josiah never bothered with any of it. Until Tuesday.