Sunday, September 19, 2010

More Midnight Crazies

So I'm up all night reading... again. I found this article that reminds me of Jacob - right hemiparesis, left middle cerebral artery infarction (stroke), infantile spasms, absence of clinical seizures (normal appearance), epileptiform activity (abnormal EEG).

Anyways, Jacob is a special case but I found the article to be interesting because I am very concerned about Jacob's expressive language.


  1. Reading this makes me SO sad that we had to advocate (read fight!) SO hard and long for Trevy to qualify for surgery. I just don't understand how the neurology world can take a wait & see approach in cases like Trev's - where the subclinical activity was absolutely stealing developmental ground from him. I look at how far he's come this year...and it fills me up with a blend of happy and sad. Happy...because how could I not be? Sad...because imagine where he would be had surgery been an option sooner?


    ((((((((hugs for your journey!))))))


  2. I know. I know that we are blessed that Jacob was born missing so much of his brain, making hemispherectomy an obvious choice. Morbid thought. I have to believe that developmental gains are not lost but have been held hostage by naughty brain tissue and once disconnected, will allow the healthy tissue to develop normally. Our boys are SO young that while time has always seemed to be the enemy, I think post-surgically, time is our best chance. I wish surgery was THE treatment for all IS cases.

  3. "I wish surgery was THE treatment for all IS cases."

    ME TOO!

    You're on my heart. In my prayers. If I've said it once... THIS is THE hardest time for your family. The emotional drama leading up to surgery absolutely THE hardest. or come over or let me know if you need anything! I've survived the first two weeks of back to school...and am feeling a little more balanced again! :)