palm ranch ramblings: asleep at the wheel

So yesterday's neurologist appointment was pretty good and uneventful. He is pleased we haven't seen any additional seizures and suggested we could try decreasing her Topamax just slightly to see how she does. He said he'll likely want to keep her on some dose of Topamax for at least 6 months even if we don't see any seizures, as a preventative. He says she is still really high risk for having additional seizures. . .like 50 to 75% chance. After that, if she isn't having any seizures, he may want to switch to a different medication that has even less side effects (ie: doesn't make her so sleepy and allows her to sweat and regulate her temperature better). But for now, he believes the Topamax is the best option.

He went over the latest MRI with us and showed us the various areas of concern. He said it really doesn't look that bad. There are areas that show a bit brighter than normal and a few areas that show a bit darker. But the thing about an MRI of the brain is that it really doesn't say much. An MRI can show horrific damage and then the kid can recover quite well, and vice versa. It is again a "wait and see" to see what she does in her own time. He says the best thing we can do is get the most amount of therapies at the most intensive levels she can handle early in her life because this is when her brain is re-wiring and learning things. So that's what we shall do. I don't think she's ready for much more at this point, considering she already has one therapy session every day of the week. But as she gets a little bigger/older and can handle more, we will be looking to add some additional outside intensive therapies that we'll have to pay for (rather than what the government program and insurance provides). I've researched and found several that are offered in the LA area, so that is good.

He was also pretty positive about the strength of her neck and the tone in her arms and legs. Although her neck strength isn't where it should be (for a child without a brain injury), he did acknowledge that she has some, so that's good. And we just need to keep working on it because it's so important to all the rest of her development. Also the tone in her arms and legs isn't normal, but not horrible either (ie: she can loosen up her stiff arms and legs and have full range of motion). We've seen improvement in her tone over the last few months for sure.

So that's what I can tell you. Overall, we walked out feeling good about things and really thankful she hasn't been having seizures.

On that note, what you are all really waiting for. . .the latest pictures:

asleep at the wheel