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!

Stress

So life has been crazy and I haven't had time to post in the last several weeks.  Our 13-year old, Emma, starred in Annie two weekends ago and she was fabulous!  After a week of late rehearsals and 3 shows over that weekend, we were both exhausted but also a little sad that it was over.

Tim managed to make it to all three shows but he also was completely exhausted by the end of the weekend.  I thought that my exhaustion last week was due to the craziness of the play and tech week, but now that it has continued into this week, I'm thinking it's more likely stress.

We have an MRI tomorrow and it has been weighing heavily on my mind for weeks now.  I had hoped after getting back from Florida that things would start to settle down once Tim was back into home routines and in his own territory.  Unfortunately things have not gotten better, they have actually gotten worse.  I guess all of my hopes I was pinning on Keppra being the cause of his behaviors have gone down the drain.  I really did think we were seeing positive changes before going away, even the kids had noticed he was doing better.

Now, however, the leg hitting is at an all time high.  He has even managed to find a way to do it while walking, awkwardly lifting his leg to hit it with his fist as he walks.  Other ritualistic behaviors have also increased to the point where he can barely sit still for any length of time anymore.

Of even more concern, the excessive talking that we were seeing before vacation has come to a point where a large amount of the time we are unable to understand what he is saying because he talks so fast.  This one worries me a lot as I have to wonder if something is invading the speech area of his brain now too.  Oh the dread of the upcoming MRI!

So, I don't know if it is all of this stress or that I'm fighting some kind of cold or virus, but I just don't have any motivation to do anything!  I can't seem to get myself to keep up with cleaning, I don't feel like cooking, and nothing is getting done around here!  I would probably happily spend the day watching tv with Tim in the family room except the leg hitting and excessive talking always end up driving me from the room.

I've found myself mostly hanging out in my bedroom.  It has become my sanctuary. It's the one room the kids don't drag their mess into, I can barely hear the leg hitting and talking from there, and the remote is mine!  I'm sometimes concerned that I've become this person who is hanging out in my bedroom all of the time but I guess I'll worry more when I start taking meals and visitors in there!  For now, I hope that this is just about getting the rest I must need right now while trying to escape from the stresses that are all around me.

I guess that's all for now.  I will update after we get the results from the MRI.  Wish I was feeling better about it!