Two quick things

First of all, I finally got around to putting up the "What Can I Do?" page. I need to say again that you have all been truly wonderful already, and this page is just a response to your continued offers of support.

Also, on Monday AJ has a blood draw to check on all of his medication levels and such. Based on those results (and the ever-increasing size of AJ's cheeks) we are going to talk to Dr. Bean about possibly tapering his steroids a bit faster. I'll post the updates on this blog.

A few changes

Just wanted to let you know that I finished the "Synopsis" tab and added a few more links. Next on the to-do list is a "What can I do?" section for all of you amazingly supportive people. The organization I would like to lend our collective support to is the IDEA League, so feel free to check the site out, donate, or get in touch with me about what we might be able to to together.

I also have to get around to a few smaller tweaks like a link to AJ Update on the DDC page and maybe a calendar of appointments and such.

In AJ news, he's currently leading a parade around the couch while playing the triangle. He rocks.

New Site

Hey everyone.

This is fairly spartan right now, but eventually I will have more of AJ's history, appointment schedule, results, etc posted, as well as some helpful links.

As far as yesterday's appointment with Dr. Bean, it went very well. Here are the highlights:

• He was very excited about AJ's most recent EEG. (Its always cool to hear your neurologist get excited about test results). There was no evidence of those absence seizures that he'd been having recently.
• Dr. Bean attributes this great result largely to the prednisone that we started him on after his most recent hospitalization. He can't stay on the steroid forever, so we are going to start a slow taper (5 mg a week, he's on 50 mg a day now) until he's off them completely.
• There has been a lot of talk about the ketogenic diet, and that most likely is still in our future; AJ has until we finish his steroid course to eat pizza and goldfish.
• We're going to start tapering his Keppra dose a bit faster than we were (3 ml/week instead of just 1ml), so we will be done with that medicine in 5 weeks. Research seems to indicate that his other meds are more effective for his condition and seizure type. It will be good to have one less thing to get him to take every day.

Again, thanks to everyone for your concern and well-wishes. Check the DDC for all of the fun stuff like snow forts and babies wearing cow jackets, and I'll keep you up to date on everything else here.