The Story of Jacob: Simmer Down

Wednesday, September 29, 2010

Simmer Down

I believe that I am more melancholy about Jacob's 2nd birthday than his impending surgery. Sometimes I fast-forward to age 5 and imagine him running and jumping and learning in school. But at the same time I want him to be a perpetual baby. As he gets older, his disabilities become more apparent - more disabling. I have no idea what 5 will look like. I'm afraid to see it because what if it is not what I have imagined? As long as he is a baby he has no need for words and "Mommy-do" everything. Don't misunderstand. I have never been afraid to let him try to do for himself. I have never been afraid to see him struggle because I always imagine success at the end. I am full of hope. I guess it's the waiting that troubles me. Are we there yet? Will we be there at 5 or will it be 10? You know that I will wait. What else can I do?

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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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Wednesday, September 29, 2010

Simmer Down

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