Frustration Mounting

I'll start with the good news.  The MRI showed that there has been no new growth.  I guess up until the last year or so, that was exactly what we hoped for every time we went in - a stable MRI.  Now, unfortunately (and even the neurooncologist felt this way), a stable MRI means that there is not something going on that we can treat.  I continue to try to feel blessed that nothing new is going on in there but it would be nice if there was a way to improve Tim's overall quality of life.

It has been really difficult around our house of late.  It seemed to get to Abby first and I felt badly that she was going through such an angry stage and that there was nothing I could do about it.  Now I realize it's just the frustration with all we can't change as I find myself going through quite the angry stage now as well.  Tim's self-hitting and self-talking has gotten so out of control that the only way to get a break from it is to go off to another room.  Which means that he has the main living area of our house (family room and kitchen) to himself most of the time.  As I sit here in my bedroom to once again get away from the self-hitting noise, I can still hear it downstairs and it literally is like nails on a chalkboard for me.

For a long time, I was able to tell myself "It's not his fault.  He never would have wanted to be this way."  Lately that doesn't seem to be working.  It's like there's only so much a person can take and then you start going over the edge!

We have been driving into MGH once a week for speech and language services for a couple of weeks now.  The new organizational systems we have been putting in place do seem to be helping with keeping him more independent and productive so that has at least been a positive.    We are utilizing an organizer with a to-do list as well as ipad alarms as reminders.  Unfortunately his first instinct is still to just turn the alarm off and continue to watch tv, but with a verbal reminder, he will get up and do his job.

On Monday, we went in to see the neuropsychiatrist.  He would like to try a beta blocker with Tim that is supposed to help with restlessness and impulsive behaviors.  He needs to check with Tim's heart doctor first to be sure it is a safe option for him.  I can't even start to get my hopes up at this point that it will help with these behaviors but I truly feel like I am losing my mind!  

It certainly isn't helping any that I was just about over one cold and managed to catch another one.  Feeling pretty lousy healthwise at the moment.  But also feeling a lack of laughter and fun in my life.  It seems like I'm just plodding through each day always waiting for something good to happen.  I don't know what I would do without the kids here to bring some sunshine into my life!  I just wish they didn't have to go through all of this!