Disappointment

All I can say today is WOW.  I have felt very good about the care Joshua has been receiving.  Up to today that is.  Today has been a disappointment.

If you have been following this blog you know that we have been up to the hospital every day this last week.  Each time taking Joshua food and feeding him.  We were asked to keep our visits to the weekdays because the weekends were less structured and more chaotic.   Mother in law had called up earlier and was basically scorned for no one coming up on a day the doctor had asked that we hang back.  My wife called this evening and was asked if someone was going to bring clothes up.  The regulations are three sets of clothes which they was provided with.  So basically we were told that they had lost two entire sets of clothes.  I am beyond pissed with this weekend staff.  We go every night and feed him as he will not eat unless we are there.  We go every night and give him a shower as he will not shower unless we are there.  In the day when we are not there he will do nothing other than stay in his room on his bed.  One of the "advantages" is respite for the parents as well who have been taking the beatings.  We go through so many emotions when we have to leave him there.  We are doing what we are suppose to be doing.  We are following the Dr's request.  Yet we are taking two steps backwards for every step forward.

So far we are not seeing any other medicine changes.  I think they are going to have to re-evaluate the situation and soon.