Since all the tests were completed, a lot has gone on. In July we met with Dr Snead, our neurologist, and our new neurosurgeon Dr, Rutka to discuss the results of their testing. The verdict was that Josiah is a surgical candidate, and their recommendation is a hemispherectomy. This surgery consists of removing half of the brain, In Josiah's case, it is his badly damaged left half of his brain. The left half of his brain is seizing almost constantly, and the right half remains in good condition. If we don't have the operation, the right side of the brain will learn to seize, and Josiah would eventually decline, losing his ability to walk, talk, and all cognitive functions. After the surgery, he will remain in the hospital for 2-3 weeks, and then transfer over to a rehab hospital for 2-3 months. ,Rehab will be necessary because removing the left side of the brain will render the right side of his body immobile. He will need to learn to move his arms and legs, fingers and toes all over again. He wont walk for a while, but with intense daily therapy, should be able to walk again!!! The surgery obviously involves some risks of complications, such as hemorrhaging, infection, and there is the possibility that removing part of the brain will upset the bodies complex cerebral spinal fluid system, resulting in this fluid accumulating and causing deadly high pressure on the brain...the remedy for this is another surgery to put in a fluid drainage shunt to assist the body with controlling the fluid. Surgery is booked Josiah cant be on the Ketogenic diet at the time of surgery for a number of reasons, and so we will have him weaned off the diet one month before surgery.
More soon....
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