The Story of Jacob: If I knew then...

Saturday, September 8, 2012

If I knew then...

The note I would have written to myself would have said "Just breathe. You will find your way." Link

2 comments:

ElizabethSeptember 14, 2012 at 2:13 AM
Thanks so much for sharing our video. I read a bit of your blog and learned about your adorable little boy -- my daughter was diagnosed with infantile spasms in 1995 and is now seventeen, and unfortunately her outcome wasn't nearly as positive as your son's, but we have definitely "made our way." All the best to you and to your family as you journey on! Thanks again --
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Jacob's MommySeptember 16, 2012 at 6:22 AM
I am forever inspired by other parents. I would not have found my way otherwise:). Thank you!
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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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Saturday, September 8, 2012

If I knew then...

2 comments: