The Story of Jacob: 13 Days

Thursday, December 9, 2010

13 Days

The background of the blog has always been colorful and child-like because this is the story of Jacob afterall. I changed the design in October to a dark and scary bridge. Trevy's Mommy often writes about the Miracle Nightmare and the Healing Side of hemispherectomy surgery. So I went literal. We are ready to cross and scared as shit. But 'tis the season and there are enough miracles to go around for everyone.

2 comments:

AnonymousDecember 9, 2010 at 3:44 PM
Jacob IS a miracle.
Anticipating more challenges to come but, over time, a wondrous world that will open up to him.
Be brave. We are all beside you.
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happy's mommyDecember 10, 2010 at 2:50 PM
(((((((hugs for the journey)))))))))

...danielle
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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.

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Thursday, December 9, 2010

13 Days

2 comments: