Finally, an update!

Well, I’m long overdue in posting this; sorry to those who’ve been wondering what’s going on with us. We’ve had a busy month since I last posted with traveling to Oklahoma and Texas. We had a great time with both families for the holidays and enjoyed seeing everyone. I would have liked to see some of you in TX who were within a couple hours drive, but we had most of our days filled. One of our gifts from Wayne’s parents were tickets to the Cotton Bowl in Dallas on New Year’s Day. Unfortunately, Nebraska lost to Auburn, but it was a fun experience for us (my (Kelly) first Nebraska game, a cultural experience).

The first thing I need to let everyone know is that we have decided to postpone the Ketogenic diet which we had been planning for Micah. I realized most people didn’t know this when I had a friend email last week and suggest that I have prayer coverage for Micah for those days he would be hospitalized. Just before leaving for the holidays we had a conversation with Dr. Raja (Micah’s neurologist). He had been to a conference with other neurologists and spoke specifically with them about Micah. Their opinion was that Micah had not been on enough of the Vigabatrin (one of his meds) to make a difference in reducing seizures. So after some discussion and prayer, Wayne and I decided to increase the med per Dr. Raja’s suggestion. We gradually increased it over 4 weeks (we are at week 4 now) and will wait for a little while longer to see if there is much improvement. Honestly, we haven’t noticed much improvement in terms of seizure activity. He is still having them daily, sometimes 2 or 3 times, and they are just as intense at times as they had been. However, all of his therapists say he seems more alert and socially responsive to them. So, it could be that he had been having seizures we couldn’t see and possibly is not having them now.
We will watch over the next several weeks and if there still has not been a lot of improvement, we will probably look at starting the diet sometime in March or April. We will keep you updated.

We did move to a our new apartment (the next building over) thanks to some very gracious friends who gave several hours of their time to help us. They even helped us clean our old apt! We have great friends! It was the easiest move we’ve ever done thanks to them! The situation is much better; it’s great to be able to live normally without worrying about making too much noise. Micah seems to enjoy crawling all over the place. When we were in Oklahoma, he started pulled himself up to stand! He is doing this often now. He can only stand supporting himself on the couch or a chair and only for a few seconds, but it’s great that he’s trying!
We should be a little more regular about posting now that we are settled.