Just an update

I have pictures I need to pull off my camera and a news letter to write, but I simply don't have the energy right now. So, you get this pathetic excuse of an update. But hey, at least it's a post.

So we saw the neurosurgeon on Tuesday, the genetic doc on Thursday, and we see our regular neuro on Monday. They all share the same office and nurses so we've seen them all a lot this past week. Not to mention the countless phone updates they get from us.

First, the surgeon. All things considered, it went well. We really liked the guy. He was very personable, spent plenty of time with us, and has even done some research in TS and just had a paper come out. Jack really liked him too. Although he prefers flirting with the nurses. We are being checked into the hospital on the 28th to do some tests to see if Jack is a surgical candidate. One of the nurses, Tiffany, got us in quickly. There is usually a 4 month wait but she saw we were coming in and she worked her magic for us.

Jack will be hooked up the an EEG for 3-5 days. And if that hell isn't bad enough they will also be doing a SPECT scan. We may also have to drive to Houston to get a MEG scan, but that would be later. The longest we've ever been hooked up is for 2 days, and that was before he was on the verge of walking.

We will figure out where to go from there. We might start the Ketogenic Diet then, which is a HUGE lifestyle change for all of us. Basically, no eating anything that isn't prepared in our kitchen. ANYTHING. Everything has to be measured out to the gram and it's so strict that he can't even have tylenol because of the sweeteners and there are only certain kinds of soaps and sunscreen he can use. It's bizarre. I don't know how breast feeding plays into it, that's one of my big questions. It's basically a no carb diet, meaning only meats and very few veggies. It's extremely challenging, but it has about a 30% success rate. Ideally he would be on the diet for about 2-3 years and then weaned off of it. The problem with Jack (and TS kids) is that the brain damage is still there so weaning the diet might cause the seizures to come back.

And Jack has a higher success rate to fully recover from surgery if we do it before he's 2. The surgery has about a 60-80% chance of stopping the seizures for good. But the risks... lets just say that they may have to put me under too while he's in surgery.

So, we are doing a med change. Again. We had 2 seizure free days this week, which was the most we've had in months. But then today he had 9. Each day seems to be a total crap shoot.

Jack remains the cutest, sweetest, most lovable baby ever. He is tall, now 33 inches and almost walking. Yesterday he took 4 steps. He gladly walks holding onto someone hands now, and I didn't think he would ever do that and he continues to love to push his pushing toys. He has also started signing! He knows the sign for "more" and uses it with gusto. It has cut down on the fussing for more food. We're working on other signs too, he just hasn't started doing them yet. And he loves it when people clap for him. It's super cute.

Ok, that's all for now. He is in bed and these days we don't know if he's going to be up at 5:30 or sleep until 8.