A New Day

Good morning.  Joshua is doing amazing!  We got out of the ICU yesterday.  That meant removing his central line (IV sewn into his neck) and his art line (arterial line sewn into his wrist).  We got another MRI, although it was 3 hours late and didn't happen till dinner time, but have not heard results.  It was done so late it will be read by radiology this morning.  Even without that he is doing so well the fellow (specialist in training) wanted to send him home this morning.  The nurse had to stop him and remind him that Josh is not eating and drinking yet and still needs IV support (he still has 2 lines). He is allowed to eat he just has no appetite. I am waiting for the results of the MRI and we are encouraging him to eat but we are hopeful to be going home soon.
We met with Oncology yesterday and we do not have a plan yet.  We need the results of the pathology to make one.  We discussed options and there are many tough decisions ahead.  She said any treatment needed to start within 21 days of surgery but they try to go sooner so things will happen very fast.  Social work came down that is standard and we are waiting for a physical therapy consult too.  They cut the muscles in his neck to get to his brain so he can not turn his head well right now and is very weak.  Once again, in the brain tumor world, he is a rock star.  Many kids can't move for a week after surgery and he walks to the bathroom unaided.  I am going to put him in a wheelchair and take him for a ride later this morning to try and get him alert and maybe hungry.
We are so grateful for the support of our ward family.  They are literally swarming us with food and people to take care of the children.  Our lives are crazy in the best of times and that makes it a monumental feat right now so we know what a sacrifice this is.  I have been out of touch and I am truly sorry about that.  I feel very much that I have to be here at the hospital not only physically but mentally.  Joshua needs my attention 100 percent to come to grips with this all and honestly it is all I can focus on.  We have decided to postpone the yard sale for a week (it is supposed to rain anyway) and I can not worry about it.  This morning Joshua and I had a wonderful talk about journeys.  I reminded him that each of us is on a path in life and this is his path.  I can not tell you how grateful I am that I get to be his mom and walk with him for a while.  I think he is slowly understanding more about where he is on his path but we are glad to let him figure that out in his own time.  He is very worried about this time being like last time where he felt isolated and couldn't do the things that he wanted.  I assured him it would not be and we would make anything he wanted possible if we could.  I would love any visitors that can come, just call first to be sure if we are here at the hospital or if they kick us out, at home.  He needs to know that he has friends and family and be reminded that he is loved and needed.  He needs as much normal as we can give him!  We love you all, we could not walk this path without you!