Saturday, July 21, 2012
Levi has had one week free of seizures! This is a good thing. I think his meds were getting to him today so he wasn't quite himself again. With all the days when he's perfectly normal, you think I'd be okay with a day or two like today but I'm not. It just messes with me to see my baby so drugged and emotional.
The good news is that if he stays seizure free for another week, we'll begin to decrease the dose of steroids. The scary things is that with this reduction the seizures could return. We are hoping and praying that they never return, but as the doctors begin to regulate the medication, they could come back. So, he could have to stay on the steroids for quite awhile (or forever). Our hope, though, is that we can completely eliminate all medication within the next couple of months. There is a chance that this treatment could cure his seizures completely (a small chance, but a chance!). So that's what we're praying for. Feel free to join us! :)
Lastly, Levi started yet another medication today. Steroids lower our immune systems. I knew this. I've known several people who have stayed away from large groups of people and lived very cautiously because they were on steroids. Apparently, Levi is on such a high dose of steroids, though, that his immune system is SO compromised that he now needs to take preventative antibiotics to help keep him from getting sick. They're concerned that if he were to get sick, it would be severe. So, he started his preventative antibiotics today. Please also be praying that he stays healthy through all of this. Most of you know how I hate pumping chemicals into my babies' bodies. It's just not right!
So there you go, things are still looking up, but I am nervous that reducing the steroids won't work. Thank you again for all of the prayers!