Wednesday, April 13, 2016

Update on Ben

It's been quite a while since I blogged.
So now I'm in catch up mode and I apologize for the barrage of posts headed your way.

I thought I would start with an update on Ben.
In mid January we decided to come off of the medical marijuana.  We had been on it for almost a year and not really seen any benefit.  After the first week off, seizures increased and we began to question our decision.  We contemplated putting him back on the oil because things were definitely worse.  However, after two weeks things went back to normal.  As a matter of fact, last month, he went for three weeks, not seizure free, but cluster free.  We haven't seen that in I don't know how long.

(Lately Ben has taken to piling books, one at a time on top of whomever he wants to read to him).

Seizures haven't been our top concern lately though.
I can't remember if I've mentioned it in any of my past posts or not but Ben has become extremely aggressive.  He hits, head butts, kicks etc.  The weird thing is, quite often, there seems to be no reason for it.  It got so bad last fall that we started going to a psychologist.  He had us try a bunch of different strategies but nothing seemed to help.  The psychologist finally told us there was nothing more he could do.  We have been hoping that it might just be a phase and that things would take care of themselves eventually.  No such luck so far.
It breaks my heart to see other kids afraid of him, his own siblings running and hiding in their bedrooms because he's hurting them.
It has really affected the mood in our home.

He does still has his sweet moments though...
The other morning he climbed up next to Abby on the piano bench while she was practicing.

Then he found Andy doing sit ups and became his buddy.

He's doing fine with school, loves to play on the iPad and watch Super Why, Elmo, Mater and Mickey Mouse.  He eats anything we put in front of him which is a blessed result of the keto diet.
He loves to play outside and in water.  
He enjoys tickling people and is a great, little snuggler (when he's not hitting :)
That's our Ben...and we love him to pieces

1 comment:

  1. Bless his heart, I hope it does resolve soon. We keep praying that it will!
    Love the shot of Andy buried in books--and the cuddles. : )