Monday, May 27, 2013

Update on all things Ben

I thought I'd fill you in on how Ben is doing.

First, the diet.
Ben is eating the same three meals every day.
Chicken/mayo and banana for breakfast, hot dogs/ketchup and cream for lunch and chicken/butter and peas for dinner.  Until he complains we'll keep it that way.

Last week I was aware that Ben had gone into the pantry and closed the door.  After a bit I got curious and went in to find him eating cheerios off the floor.  Oh I felt so bad ripping them out of his hand :(
A day not long after that I was preparing popcorn for his snack.  Matt asked if he could have some too so he popped a bag in the microwave.  He asked me to open it and I spilled a bit when I did.  Ben asked to get out of his chair and as soon as he hit the ground he bee lined it for a kernel that had fallen.  At least that time I could console him with his own piece of popcorn.

Last week Ben had 6 big seizures.  The last one was ten minutes long and we had to pull out the Diastat.  Haven't had to use that in a long time.  It was a strange seizure too.  It was normal for the first few minutes and then the jerks got really hard for a minute.  Then they tapered off until he was no longer convulsing but he was still seizing (his eyes were big and round and staring off to the side and his hair was standing straight up and his bottom lip was curved up in the biggest frown...never seen that look before).  That lasted for a minute or so and then the jerking started again.  I gave him the meds and it stopped within 15 seconds.  He slept for 3 1/2 hours and then woke up and sat on the couch with me for 30 minutes before falling asleep over his iPad.  He slept for another 3 1/2 hours.
We're hoping it was just a coincidental bad week and that we're not starting a new pattern here.

Last week we went to a program at the school.   Of course Ben didn't want to sit still so Andy and I took turns walking around with him.  Ben and I stepped outside at one point and an elderly gentleman made a comment about Ben's helmet and what a good idea it was...his grandchildren are always falling and getting hurt when they're learning how to walk.  I just smiled and agreed thinking the topic would pass quickly.  He kept going on however, so finally I mentioned that Ben had epilepsy and that's why he wore the helmet.
The man said, "Oh, so he has a little bit of a problem...well, he'll grow out of it".
I can rarely let that pass.  I explained that he wouldn't.
Then the man made Ben belly laugh by talking like Donald Duck.
When we went back inside Ben sat down on the floor next to a 9-12 month old little boy.
I think the boy was afraid of how Ben looked in his helmet and how aggressively he sat down next to him.  He started to cry and so his dad picked him up.  The same thing happened a little later.  I felt so bad for Ben...not understanding what was going on.  Bless his heart!

My sweet sister in law alerted me to a super deal on a BOB stroller recently.  These are good, strong and sturdy strollers that run between 4 and 5 hundred dollars.  We've had the same stroller that we bought years ago when Josh was born.  It's old and not in very good shape.  Ben will probably need a good, tough stroller for at least several more years so I was excited and thought it was a great opportunity.  We ended up paying half of the original price!

I love does Ben!
It's kind of an all terrain stroller as well as a runner.

Gotta love it!

As far as personality goes, he is just as sweet and precious and funny as ever.
I love this little guy!


  1. You are a brave and courageous mom! Bless you!!! And Ben is so adorable - wanna jump in the picture and give him a big hug! Maybe some day!!


  2. Love the many faces of Ben--he can be such a ham for the camera. I need to send you the photos from yesterday, but I haven't even downloaded them yet. : )

  3. I love all the pics in this post!