Wednesday, September 1, 2010

Scary new seizures

Well Ben is having two new kinds of seizures - all mixed up into our days. They are scary because they look a lot like what his neurologist described as infantile spasms months ago. Infantile spasms are a particularly detrimental kind of seizure because they are often accompanied by irregular brain activity that lasts long after the seizure and can prevent learning and development. Oh my. I'm more than a little nervous. We have scheduled another EEG to determine whether Ben's brain activity is normal or not. I hate all of this so much. I wish Ben could just get a chance to grow without this handicap in his brain.

That being said, we still have so much to be grateful for. He smiles every single day. He often laughs and giggles. He knows when I've left for a few hours and is sooooo happy to see me when I return. He can sit now (although he does fall back, I think on purpose!). He can even stand if I put him up against a table or couch. He looks so cute doing that, I can't wait to see him stand and walk on his own. He knows his sister and loves to interact with her. He eats really well without a feeding tube. He is down to one medication. All great things to be very, very thankful for.

4 comments:

Farah said...

hi catherine,
i'm so sorry about the new seizures, but i'm glad you are finding things to be thankful for, too.
keep us posted on the EEG results, please, and on the moving plans!!
lots of love to all of you - xoxoxofarah

Captain Rich said...

Scary time, but you are doing a wonderful job with Ben and with Chloe!! Love, Dad

annapate said...

I'm sorry to hear this. I wish it would all stop. I'll be thinking of you and sending good vibes your way.

Farah said...

we need pictures of ben ben and chloe in their new home!! xoxoxo.