5/26/10 -Day 23

I think I may be at a loss for words...

Day 23 basically the same as day 22...maybe a little worse, which I didn't think was possible. What I miss the most is his smile...I haven't seen it in 2 days :(

Steven was with his therapists, Aimee and Angie when I got there this afternoon. As soon as they wheeled him down the hall I could tell I was in for another battle. Today it was just the two of us until about 4 when Katie got there.

I promised myself that I would not lose my patience...and I did a really good job I think. Every time he started swearing, I would say, we don't use bad words...right? And he would repeat, we don't use bad words.

It seems like we need to keep his attention at all times...but the problem is, his attention span is about 1 minute long. I tried cards, games, pictures, questions, coloring, anything I could think of. What seemed to satisfy him the most was walking up and down the hall. I think I walked him up and down that hall about 100 times.

He had therapy again at 2:30 (because he napped during his morning rehab). His therapists allowed me to come in with him. He walked quite a distance, he walked up and down 4 steps...all assisted of course. He also used a weight bench...did a great job with that. He behaved well for the therapists...a little nasty but not much.

When, Katie came, he was in one of his moods...we tried walking him, however, at one point, for no apparent reason, he punched Katie in the hip. Really...punched her. Later on, he slapped her arm...neither one of us saw it coming. I'm so proud of Katie, she totally keeps her cool with him, didn't really acknowledge that he did anything.

Then dinner came...and anyone that knows Steven well, they know that he is one of the pickiest eaters ever. Well, this hasn't changed. They changed his diet to soft foods today, so he got a "hospital version" steak sandwich. Looked pretty gross to me too...but I was hoping he would eat it. Nope...not having it. So the nurse, Mary, brought him a boloney sandwich. He took two bites and was done with that.

At this point, the nurse saw how agitated he was and that we were struggling with him, so she asked him if he was tired and wanted to go to bed. He said yes. I wish it was easy enough to say, let him go to bed and take a nap, however, everytime he is moved from the wheelchair to the bed, the nurses have to get a new order from the doctor. Pain in the butt.

As soon as she put him to bed, out he went. Dead tired. From what I'm told, it is normal for him to act out for numerous reasons...tired, has to go to the bathroom, hungry, in pain, but he cannot explain it to us...so he acts up.

I left when he finally fell asleep. Patrick and Cindy stayed with him. Well I guess the nap was short lived. He woke up and was as feisty as ever. The nurse gave him a shot to help calm him down, but I guess it didn't work much. Pretty much the same behavior as earlier in the day.

After struggling with him for another 2 hours, the nurse came in, gave him his evening meds, he pulled up his blanket, laid down and went to sleep. That was it, he was done.

I really hope we make it through this stage.

I guess I wasn't at a loss for words...:)

Please keep praying...still very, very needed. Love you all <3