Got my baby back

Last week, on Wednesday, we decreased Lively's ACTH from 0.2 ml/day to 0.1 ml/day. Each week we decrease by 0.1 ml and our maximum dose was 0.7 ml, so we've been doing this for quite awhile (due to some unexpected adjustments, Lively has been on ACTH for almost 9 long weeks now). ACTH has been a mixed blessing. Lively's seizures have certainly improved, which I understand is very important. However, the side effects have been very difficult for our family.

We're on the lowest dose of ACTH now, and there was an instant difference when we switched. Lively immediately slimmed down considerably. So much of his weight must have been related to edema that when we lowered his dose, his cheeks and chins shrunk within hours. Literally. He went down for a nap, and when he woke up, he was less puffy.

Lively still doesn't look like himself entirely, but I can see him when I look at him now -- and this is something I haven't been able to do in weeks, even months. Better yet, his personality is coming back. Pete and I really didn't know how bad things had gotten until we realized, when we heard Lively laugh again, that we hadn't heard him laugh in weeks. He's cooing again, and babbling, which hadn't happened since before the seizures started. He rolled over today, which he also hadn't done with any regularity since before the seizures. And then he rolled over again. And again! Best of all, he does his happy dance while squealing with delight. It's the best sound in the world.

Pete told me a few days ago, I feel like we're getting our baby back. I had been thinking the same thing.

I haven't seen any seizures in several days -- at least, I don't think I have. Sometimes I see little things and wonder, but certainly there's nothing obvious. We're increasing Lively's topamax each week, so we have new side effects to contend with, but they're not nearly as bad as the ACTH. By way of trade off, the topamax must taste disgusting, because Lively fights every dose (three each day) and Pete and I are at wit's end trying to find a way to get him to take it. We've tried a suspension in a syringe, sprinkles mixed with jam (and every other food imaginable), but nothing works. Suggestions, anyone?

I'm trying to be optimistic, and I'm working hard to enjoy my precious baby all the more now that he is happy and more comfortable. However, now that I know that anything can happen (meteors falling out of the sky, or my tiny baby having a stroke), I can't help but worry that this new progress may not mean what we think, that there are new manifestations of the stroke we haven't seen yet. I continue to struggle with living in the moment.

I also continue to be grateful for the love and support from friends and family. Pete's parents recently took care of Annie and Lively on a Saturday so we could see a movie! Pete's sister visited us for a few days and really took care of all of us while she was here. My mother came to take care of us this last week while Pete and I were both on vacation, and we appreciated that so much. My grandmother and stepfather joined my mom over the weekend and we had a nice visit -- and Annie and Lively enjoyed some great-grandparent and grandparent time. Some friends from work recently arranged for dinner to be delivered to us weekly, and I can't think of a single thing that could be more helpful. So thank you, thank you, thank you, to all of you for reading Lively's updates and for your kind support.

Here's a photo of Lively that I took today. He fell asleep while I was getting his lunch ready for him (this never would have happend a couple weeks ago -- food came first). I couldn't wake him up enough to eat, so I eventually just put him down for a nap. I especially like this photo because you can see Pete sleeping on the couch in the background.