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.

Health Hurdles

We've been dealing with another health problem for our wee Munchkin for the past month or so.  It turns out he has a form of Epilepsy called Infantile Spasms.  This has probably happened in part because he was a preemie.  We'll know more in awhile as he had an MRI yesterday to have a look at his brain.

The good news about the Infantile Spasms is that he will grow out of them by the time he's about 2.  He's on medication that controls them so that is good.  The hard part is giving him the medication.  He hates it and we have to give it to him twice a day.  

Poor little guy just can't seem to get a break some days.  But we caught the spasms pretty fast and Sick Kids saw us super fast so we were able to get it under control quickly which is a good thing.   If you don't control the spasm a child can end up with some pretty severe mental delays.  

All of this has given us a clue to why his right arm (and to a certain extent right leg) aren't as advanced as his left side.  We've been getting a physical therapist to work with him and he's learning to use it.  It turns out that the root cause of all of this might be a little damage in the left side of his brain.  This is what the MRI is looking at.  Thankfully, because he's an infant he should be able to compensate for the damage.  Babies are very elastic that way.