This blog is the record of the harrowing adventure our Munchkin has been on. He's had a rough start to life, but is a strong boy who will overcome all.
Monday, May 28, 2012
A Munchkin Medical Update
I've been putting off writing this post for awhile. Many of you know already,but some don't that our wee little Munchkin is going to need some brain surgery to correct his seizure disorder since all of the drugs we've been giving him haven't been able to completely control the seizures.
He had some testing done back in January that indicated that he would need to have the surgery. The surgery is going to be happening in just a few weeks in June.
He's going to have what is called a functional hemispherectomy. If you are going to google it as I know some of you will, make sure you put the functional in front and ignore any articles about just hemispherectomy. That is a different surgical procedure and a really nasty one and you don't want to have happen to our Munchkin.
Basically it means we are disassociating his right and left brain. All of his seizures are in the left side of the brain. And apparently over time the left brain can teach the right brain how to have seizures too and that would not be good at all. Also, in a large number of cases this surgery gets rid of the seizures completely.
It's pretty scary stuff, but it should help him get better. They are predicting that he will get back to normal afterwards with therapy etc. He will at least temporarily lose the ground he's gained with his right arm, but they feel that he should do well.
We don't know when the surgery is going to be, but we'll keep you updated. Our poor little guy has a long road ahead of him, but he's a little fighter and he's going to be just fine.
Here's a link to some info about the surgery. Also we have apparently "The Guy" for our surgeon so that makes me feel a little better.
Our little guy just loves scaring us to death.
http://www.webmd.com/epilepsy/functional-hemispherectomy
I've set up a "care page" with Sick Kids which I believe we can use for sending out notices and the like. If you would like to get updates just shoot me an meal and I can add you to the list.
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Hi Bruce and Jen, I am in Canada staying with John# Laura.I'll be here till 16th July.....I'm not a facebook frequenter hence I did not know that Robbie had been having more trouble! I called Ann several times since I arrived and there's been no answer...so I was worried! Laura checked your facebook and read about Robbie's op. I hope it was very successful and that he's coming along well? Lots of love to you all ...Ruthie.
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