Day 20

By Sandy on April 26, 2015

Day 20

I left for one night and returned to find a much more playful boy. Sure looks like Josiah is feeling better. He regained the use of his right hand this evening. I think that alone made him so happy.

It had been covered with a sock and taped closed since we arrived Thursday. To keep him from ripping out his IV they needed a deterrent. It worked, though believe me he tried many times to yank it out anyway.

We had to distract him or keep his IV arm covered with a blanket so he’d forget about it. For 3 days his right hand has been concealed, one finger stuck up under the sock, the rest curved around a piece of gauze. I’m not sure who came up with that plan, but I’m guessing as he was thrashing about during the IV insertion, it seemed like a great idea. Josiah began sucking on the sock finger 2 days ago.

Day 19

By Sandy on April 25, 2015

Day 19

This makes no sense whatsoever. His very first full day in the hospital and Josiah was all smiles. He doesn’t even look sick, does he? With such joy on his face, he appears to be doing great. He looks happy and well. So why then is he refusing to eat or drink anything?

They brought a breakfast tray he didn’t touch, a lunch tray he wouldn’t even look at and a dinner tray he pushed aside. I filled a cup with 3.5 ounces of water early this morning. It’s still sitting on his bedside table. Each time I held it to his lips, he turned away.

Day 18

By Sandy on April 24, 2015

Day 18

Hmmmm…how did I end up here? Sure seems like that might be what he’s thinking huh? I guess when Josiah threw himself on the concrete in the parking lot the other day, he wasn’t being defiant. He was just weak. Too weak to walk.

He ran a fever for a short while later that afternoon and has really had no other symptoms of illness, other than no desire to eat or drink. It was clear yesterday morning, Josiah was not doing well and dehydrated.

We got to the hospital in the late afternoon and came directly to his room. I love that his pediatrician arranged for direct admission and we avoided the typical lengthy ER admission process. They gave Josiah a bag of IV fluids right away. I was hopeful he would bounce back pretty quickly but he’s still refusing food and water almost 24 hours later.

Day 17

By Sandy on April 23, 2015

Day 17

This is the picture I paused long enough to capture. It would have appeared neglectful had I stopped to snap the one where he laid spread eagle on the concrete, as I walked away. As it was, I had to stoop down and carry him. Josiah was not budging.

We had just pulled into the parking lot at my Doctor’s office when Josiah nodded off. Having him with me for the appointment wasn’t ideal, but he has been so mellow the past couple of days I figured it would work. He climbed out of his seat with no hesitation, but quickly sat down in the middle of the parking lot a second later. I had an audience watching as I did my best to encourage him to stand. He wouldn’t. He stretched out his arms and legs and laid down right there on the concrete, oblivious to the danger of it all.

Day 16

By Sandy on April 21, 2015

Day 16

Look at him. You would think such a beautiful child, so peaceful and relaxed would be low maintenance, wouldn’t you?

I woke up the other morning with a Josiah related ‘to do’ list racing through my mind and quickly jotted down the most pressing items:

1. Learn about Abilify. (medication) What are the side effects? Would it be good for Josiah?

2. Read up on Obsessive Compulsive behaviors in teens with Down Syndrome/Autism.

3. Read more about Gemiini Program. Check reviews. Consider subscribing if promising.