Headed in the right direction...

Those were the words of Sam's neurologist on Tuesday! He had his first EEG since going on the ACTH and it is much improved. It's still not perfect, but definitely getting better. We pretty much expected this because his seizures are about 75% gone - who really needs these EEGs anyway? We can tell exactly what's going on with him just by watching! The plan is to stay at the current high dose for another 2 weeks and then do another EEG, and at that point, hopefully things will be completely cleared up and we can start the wean.
So overall we are very encouraged. He is sleeping better and making great strides in development again. He's rolling all over and reaching for toys and trying to pull himself up in his crib! We are also really psyched that he is not having any of the horrible side effects that go along with the ACTH (at least not yet). He is a little grumpy, but it's mostly because he is rockin some serious teeth, and that's it. He doesn't even cry anymore when we give him the injections. He just scrunches up his face and grunts until it is over. We couldn't ask for a sweeter, more amazing little guy. He is truly an inspiration!
Last week we had additional appointments at CHOP (once you are in the CHOP machine, you are really in it). One was with Endocrinology - Sam's pediatrician was worried that he might have a growth deficiency, but the Endo said no, his growth hormones are completely fine. If anything, they are high. So Sam being in the 1 percentile for height is a "normal variation" and just means he will probably be on the smaller side. Good news there. The other appointment was with Ophthalmology because Sam's right eye has been wandering. He thinks it's because of the seizures interfering with Sam's ability to control his eye. So, we are starting with patching his other eye two hours a day to force this one to work harder (he looks so damn cute with the patch on) and if after 6 to 8 weeks if there's no improvement, he will have surgery. But, we'll cross that bridge when we come to it.
We have really learned to live one day at a time. This whole experience has taught us a patience and strength we have never known. And that love really does conquer all - even evil seizures! So I hope everyone is having a good week and I will keep you posted as Sam progresses on the ACTH. Love to all, Laurie :)