Thursday, January 27, 2011

"Hope in One Hemisphere"

Reprieve. Not since before Jacob was 7 months old. But the past few weeks have been different. Desperation is replaced with laughter. Fear and anxiety are diminished. Jacob is thriving. Since surgery, he is initiating the words hi, owee, mommy, daddy, brubru (brother), maymay (mayonnaise), tehteeh (thank you), baah (sheep), yup, and up. He used to say puh for up and bah bah for bye bye but after surgery he is even annunciating the words. At this time last year, my goal was for him to say mama. My goal for this year is for him to combine words and to annunciate all of his words.

About a week ago, I had the sick to my stomach feeling when I observed over the course of a few days that his eyes were just not right. Even though his EEG in Boston showed no epileptic activity, Jacob had a 72-hour EEG shortly after his Infantile Spasms that showed no epileptic activity but he was having seizures. His neurologist said that they may have been coming from "deeper structures".

I am hoping that if I did see seizures that they are remnants from a healthy brain picking up the pieces. Otherwise, why have children remain on anti-seizure medication for 6 months to a year after surgery if there is no epileptic activity? The naughty tissue in the left hemisphere worked tirelessly to dominate the rest of his brain for so long. And when I studied the EEG in Boston and thought the tissue in the left hemisphere was producing pathetic electrical discharges, I was wrong. The tissue is pretty angry in isolation.

Jacob's surgery was over a month ago. If not for his scabby incision, who would ever know? His recovery is fascinating to me. One half of a brain for all of this boy. No regrets.


  1. WOW - I cannot imagine how amazing it must feel to just watch him heal and change every day. I am so happy for all of you and so excited for Jacob's future.

  2. It is so amazing. If only I knew then what I know now.

  3. I say it all the time...

    it's like living with the Discovery Channel!

    I'm SO happy Jacob is thriving!