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.

Rob is all tucked in for the night

Tonight Rob was transferred over to St. Joseph's.  Sadly I was not.  They don't have the same setup that Sick Kids does.  So there are no rooms for parents to stay in with their kids.  There is a some sort of shared parent room that can be used occasionally, but not guaranteed and you are sleeping in a room with some random other parents that are in the NICU.

And they have put him in the NICU in an isolette on monitors.  I kind of feel like that's a step backwards to three/four weeks ago.  Now I realize they are doing it to make sure that he's ok but still...

This means that I'm home in the evenings now.  So that means you do get more blog updates.

Sick Kids is truly a magical place for child care.  They really do go the extra mile and a half for the kids.

One of our nurses took this picture of us a few hours before it was transfer  time.  

Bravery Beads

Sick Kids has a program for the wee ones that is supposed to help them out with being brave for all the tests, surgery and generally unpleasant things that have to happen while they are in the hospital.

Basically they get a string necklace and can collect different kinds of beads that are associated with different procedures, surgery, hospital admission, blood transfusions, etc......

I had seen a bunch of these beaded necklaces hanging off IV poles.  Some kids have lots of them.  It kind of makes me sad that they have to have so many of them, but at the same time the kids have them like a badge of honour.

While Rob is too little to make his own, I started his today for him.  I probably haven't remembered everything he's had done to him that warrants a bead, but I think I'm close.  He's got 20 beads already with more to come over the next few weeks.

In a few years when he's better able to understand, we'll give it to him as a reminder of how lucky we are to have him and what a rough start his little life had.

Home Away from Home

I'm not posting quite as much right now as I'm pretty much living with my wee Rob at Sick Kids.  He tends to do much better if I am holding him as much as possible.

Updating on the blog on my phone is not the easiest of things to do, but I will do my best to keep this blog up to date while I'm here.

We don't have a new surgery date yet but hopefully soon.