Brian is home now, and we are so happy to be home. But our journey is far from over. We are so thankful that today is the 15th day in a row he has not had a seizure. And yet the reward does not come without a cost. He has significant expressive and receptive aphasia. Meaning he has difficulty finding words (like trash, girl, shirt, etc), and difficulty with meaning at times. (didn't know what a blueberry was or a sweatshirt, but does when he sees it). When I see him struggling to tell me a story, using gestures, etc. I feel full of fear and sadness. What will his future hold? Will he improve when the swelling in his brain subsides? Will he get better with therapy? I pray he will. I want him to be independent and happy in his life. He had so much before the seizures took ahold of him. Please God, let him have it back.
He is also exhibiting the typical low frustration tolerance, easy to anger that I used to see in patients with a traumatic brain injury. So weird that now it is my boy. Good that I know about this stage, I pray it is only a stage, one he will move through. I pray for the strength and the wisdom to deal with it.
And Brian is still not feeling well. Still vomiting daily, and still gets the chills to the point of teeth chattering when he takes a blanket off him. He needs help walking, which will improve I know for sure. So it is slow going, and I am so scared. I had an 11 year old who was strong and healthy and got straight A's. And now I have a 12 year old who just had major brain surgery and has significant deficits. . .
So I will dedicate my life to helping Brian get better and all my boys adjust to our new phase in life. Maybe I was guided into the path of pediatric occupational therapy at childrens hospital because God knew this was in my future. . . .
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