Well, I sit trying to figure out how I feel about what I'll write concerning Ammon's neurological evaluation at Primary Children's Hospital on Friday. Maybe putting it in writing we help me process it too.
The good news is that there will be no need to have neurosurgery to remove the cyst at this time.
The bad news is that there will be no need to have neurosurgery to remove the cyst at this time.
I was able to see the cyst in the views from the CT and MRI scans and it is huge in comparison to the other parts of his body in the scan. But, it does not appear to be growing and they will continue to monitor it but the likelihood is that his brain has learned, and is learning, to grow around it and compensate for it being there. If they did do the surgery to drain it they could go up his nose as it sits at the bottom of his brain, just under his left eye. They would have to put in a shunt as it will fill up again after being drained.
But, the risk is not worth the result...which is pretty much that removing it won't stop his seizures. It won't improve his language. It won't improve his balance and his sense of himself in space and motion. Ammon has global problems with the left hemisphere of his brain. The electrical impulses are not normal in his left lobe. His language center, which is in the left hemisphere in the brain is compromised. His seizures appear to be occurring in the left hemisphere too. It is likely that in the first trimester of his mother's pregnancy when his brain was forming something interrupted or influenced the formation. It could have been toxins, some fluke of development, they don't know. But it caused his left lobe not to form the way it should. It caused the cyst to develop. It caused the injuries to his brain.
His brain is not deteriorating. His brain will not get worse than it is now. It will only get better. But while he will make strides in his development, it is not predicted that he will ever be "normal" in terms of language, particularly expressive language. He will struggle with this his entire life.
In the past he would likely be labeled brain damaged. Today we call him brain different. I like brain different much better. No matter how optimistic you are as a parent, to hear your child has a significant brain difference is still painful. We need some time to grieve this news and then we can move forward. As parents, we have heard this before about another of our children. We were told that there was a slim chance this child could grow up to be able to live in a group home setting but that likely this child would never be independent. This child is legally considered mentally retarded (I hate that word but that is the definition by the law). Nine years and countless hours of special education later, this child scored a 23 on the ACT this spring and no doubt will be able to attend university as is the plan and live an independent life.
So, we continue to hold that same hope for our Ammon. We will immerse him in a language rich environment and continue with special education and love the stuffin's right out of him. But today we still are crying for him, for the extra difficulties he will face, for dreams that may never be reached. However we are confident that he will continue to meet life with his bright smile and determination and that makes us smile too.
We will be moving towards a picture based communication strategy for him. If any of you have experience with that we sure would love to hear how that is working for you. Ammon's visual memory is very good and we want him to have the easiest time in letting us know his wants and needs.
His blood work is looking much more normal. He is now on tryleptol in addition to his valproic acid for seizures. We will increase the tryleptol and decrease valproic acid until in about 4 weeks he is only on the tryleptol.
Thank you all for thinking of him and caring about him. He will continue to need this village as he grows but he will be fine. We will be fine. His life will be good.
