The Story of Jacob: Here's to Jacob

Tuesday, June 22, 2010

Here's to Jacob

Jacob's epileptologist also agrees that he should have neurosurgery. He said that the left and right hemispheres compete for dominance and that the electrical activity in the left is interfering with the right's ability to take over the functions of the left hemisphere. He said he should have the surgery as soon as possible. The neurology/neurosurgery departments at Children's Hospital Boston will meet next Tuesday to discuss Jacob and to make a formal recommendation. Jacob also had his gross motor skills evaluation and although he is delayed, his scores have improved since last year. Finally, we received the results from Jacob's Constraint Therapy and he went from a percentage score of 2% to 26% for use of his right hand! I feel like I'm writing one of those Christmas newsletters except this one is about Jacob's brains. Nonetheless, it's full of cheer.

2 comments:

AnonymousJune 22, 2010 at 7:53 PM
Grammy says hooray from Atlanta! Very good news.
ReplyDelete
Replies
danielleJune 23, 2010 at 1:13 PM
big deep gulp of air...

I'm not sure how it'll be for you guys. But for us...once we had a date it got a little bit easier. Until of course the date was suddenly upon us. Then it got harder. Until a few months after. Then it got easier again. Until...

Well...that's the story of our life I guess. Ups and downs. Comes with mommy territory anyway. But especially seizure mommy territory.

((((hugs))))

...danielle
ReplyDelete
Replies

Add comment

His Story

Jacob was diagnosed with Infantile Spasms on May 7, 2009, two days after we observed his first jacknife seizure. He was admitted to Hasbro Children's Hospital that afternoon to begin a course of treatment with ACTH. The next day, an MRI revealed the cause of the Infantile Spasms - a stroke in utero. Two-thirds of the left hemisphere of Jacob's brain was replaced by cerebrospinal fluid. We were discharged after four days and continued the ACTH treatment. After four weeks, the Infantile Spasms and hypsarrhythmia on his EEG were resolved but another seizure type emerged, complex partial epilepsy and myoclonic seizures.

Jacob was also diagnosed with right hemiparesis, a slight paralysis of the right side of his body. He made great strides walking independently but had limited functional use of his right hand. In February 2010, Jacob participated in the Constraint Therapy Program through Hasbro Children's Rehabilitation Center and participated again in August. The program involved intensive therapy with his right arm and hand. Jacob also received physical and occupational therapy and speech therapy through his Early Intervention Provider.

On December 22, 2010, Jacob underwent a left functional hemispherectomy, disconnecting the left hemisphere of his brain from the right hemisphere. Our hope was that he would be seizure-free and off of his anti-seizure medication.

Jacob did not have another seizure following his surgery and within nine months, he was weaned off of his anti-seizure medication.

Although early detection, aggressive treatment, intensive therapy, and self-advocacy have been essential to Jacob's rehabilitation, Jacob is blessed. He is an amazing surprise.

Pages

Tuesday, June 22, 2010

Here's to Jacob

2 comments: