See ya, 2011

So much has happened this year. There were many joyful times, but I can't say that I'm sad to see this year end. The going has been tough. But we've made it, and we are in a far better place now than we were in January. Helmet went on, helmet came off. Meds started and ended. Diet started, and will end in 2012 (more below). Whew.

We have had wonderful holiday celebrations with our families in Harrisonburg and Goshen. Micah loves his grandparents, aunts, uncles and cousins. He anticipated opening presents even more than last year. He reveled in all the Christmas music, and was able to sing along with parts of many carols. Once he heard "Let it snow", that became a favorite, and he would often sing it in the morning when he first looked out the window. Hoping, always hoping. This is a boy after my own heart. If this warm weather continues, we may need to move north! He enjoyed helping to decorate (and occasionally un-decorate) the Christmas "treat" (tree). No Christmas goodies for him this year, but then, he had no trouble maintaining his trim figure either!

So, food. In consultation with our doctor and dietitian, we have decided to try and take Micah off the ketogenic diet. He is doing well and not having any clinical seizures at this time, though he was, as of December 12, still having sub-clinical seizures. Not many, but some. We have increased a medicine to try and alleviate those last seizures. The diet change comes because our doctor no longer thinks the diet is beneficial to Micah. And believe me, if it isn't, I want to be DONE! It is hard enough to persevere when it was doing something. But when we heard our doctor equivocate about its effectiveness, the decision to stop was easy. We began the weaning process a little over two weeks ago, and it is proceeding at a considerably faster rate than we had originally been told it might be. For this I give thanks!

If all goes well and his seizures do not recur, his last date on the diet will be January 16. For several weeks after that he will not be allowed to have sugar or sweets, but other than that can begin eating regular food. He will have been on this diet for nearly a year at that point. David and I wonder what this will be like, to have a child who is able to eat normally. Be normally picky. Make choices about food. Have the occasional treat. Eat goldfish crackers. Eat bananas instead of just a tiny slice with his macadamia nuts. How will we handle not having the same kind of control? On the one hand it will be amazing not to have the responsibility of cooking separately for Micah, usually late at night when we'd rather be sleeping. But we have known exactly what he has eaten for every meal and every snack for a year. Will our keto-induced paranoia ease? Yes, but it will be an adjustment. As I grocery-shopped this week, I was wandering the aisles imagining all the things that we will once again be able to give to Micah.

More details about what is next on this journey will be forthcoming. But for now, we look forward with anticipation to 2012, knowing that we cannot go where God is not. Happy New Year, everyone!

Good News/Bad Mama

Today it has been five weeks since we've seen a drop seizure! We have received the preliminary results of Micah's EEG of two weeks ago, and it showed no clinical seizures, but that he is still having what are called "subclinical' seizures localized in the left frontal/temporal lobe. We don't know much about what this means, other than that we can't tell they are happening because they don't present outwardly (clinically).

We continue to rejoice in the cessation of the awful drop seizures and pray that it continues. Micah, as those of you who have seen him recently, has changed a lot, for the better. He continues to improve in communicating, and is rarely randomly tired in the middle of the day like he was before. He notices what is going on around him and responds to it. He is loud in church (we have to start working on when it is appropriate to talk loudly, and when it is not). We just haven't had to deal much with that recently. So we're on a steep learning curve as well. Discipline tactics that worked a few weeks ago no longer do. We are learning fast! He is so much more energetic and mischievous!

This led to a "bad mama" day on Thursday. For the first time since he started the ketogenic diet in February, he was able to sneak some unacceptable food. Twice. I felt pretty dumb. I was making some cookies and thought he either didn't care or couldn't reach them as they cooled on the counter. I was wrong on both fronts. All of a sudden he came up to me with half a cookie in his hand, some on his face and a delighted look in his eyes and said, "Yummy!". I immediately got it away from him and called the doctor's office. There are probably as many carbs in half a cookie as he gets in several days. I knew that he could have a seizure as a result. He didn't, fortunately. In fact it didn't seem to phase him at all. Other than he wanted more cookies. So I made sure that he couldn't reach them, but then about 15 minutes later, I found him on the family room floor with a jar of peanuts between his legs, chowing down. Argh! Again?! Poor kid just wants to eat regular food. I have no idea how many peanuts he ate. But he was fine, again. Until about 10pm that night. Everything came back up. Twice. His body just wasn't used to all that carby food. He was fine after he finished throwing up. I guess dealing with throw-up in his bed twice was some of my penance for letting my guard down. Twice. Now, I know for sure that I'm not actually a bad mama, but the dichotomy made a nice title.

Ah, well. No harm was done. We would dearly love to get him off this diet. It is becoming harder and harder to continue. Especially after he didn't have seizures in spite of cheating. We'll hear more from our doctor about that, as well as the results of the MRI he had yesterday, checking again for abnormalities in his left frontal lobe. No news is good news at this point.