A tough day

Here is a quote from a TS mom. She wrote a blog post about her daughter and doing tests and getting bad results, something that we will have to deal with for the rest of our lives. Anyways, here is the quote:

"and you know there will be a next time, and it makes your heart hurt.

Still, you are so not ready when the next time comes. It’s a mugger, and you’re not even walking after dark."

And it's from here: http://jenniferlawler.com/wordpress/?p=747

Tomorrow marks one month that Jack will be seizure free. I can not tell you how thrilled I am about that. I was beginning to wonder if that would ever happen. If we would ever get more that a few days freedom, but here we are, a full month. I'm still terrified, and I run into his room when he cries out in the night thinking he's going to be seizing but he's not, he just needs a sip of water and his blanky and to go back to sleep. We have side effects from the diet to deal with, like reflux I think, and we can only guess as to what's going on and what's making him not eat because he can't tell us yet. But the benefits far outweigh the side effect, even if that means spending 1/2 a Sunday in the ER because he won't stop crying inconsolably for hours and you think he might have kidney stones.

At the same time, as we hit the one month mark of being seizure free, we also got bad new. Jack has his follow-up ECHO today and we found out that his heart tumors have actually "grown significantly" instead of shrunk, like expected. And it is like being mugged, like having something stripped away when we were being so careful and though that maybe, just maybe we'd finally catch a break.

I don't know what's next yet. I'm waiting for a call back from the cardiologist after he consults with other doctors. I'm waiting for a call back from the TS clinic. It's a lot of waiting.

And don't ask me why the font is all funny. I tried fixing it and it didn't work, and I don't have the energy to fix it.