Getting Away

Last weekend David and I had the privilege of a night away just the two of us. It has been a long time since that has happened and we needed it! Micah went to his grandparents' house for the night and we headed to Holland, Michigan to stay at our favorite hotel, CityFlats. It was nice (as any parent knows) to be responsible for only ourselves again for a brief time. Micah had a great time with Grandma Marg and Grandpa Jim. The weather was windy, but not rainy or too cold, so we were able to do some walking. Sunday morning we visited Mars Hill Bible Church in Grand Rapids, Michigan, where Rob Bell and now Shane Hipps are pastors. Quite the interesting place--we enjoyed our visit. It may warrant another post of its own sometime.

The preparation for being away from Micah, though, was intense. I had to prepare all his meals and snacks, label everything, and include some "emergency" food in case he wouldn't eat what we sent along. It took a long time! This is a complicated, very specific diet that he is on, so I didn't want my parents to have to deal with that this time.

We went through a phase this week where Micah was refusing to take his medicine. He has a very strong tongue and a convincing fake swallow! Even with a syringe he was able to spit it back out. So that was stressful. Not because we think his meds are doing much, but because it can be dangerous to suddenly stop seizure medicine. But nothing bad happened because of it, and the phase is over, thank goodness!

Micah's seizure numbers have been steady in the upper teens and low 20s for the past few weeks. We have one more increase in his diet that we can do, to 4.5:1. We are in the process of getting all his meal plans switched and approved by the dietitian. Once we do that, we'll just wait and see and hope for even better control. We saw a significant decrease in seizures with our last fat increase.

I'm used to the helmet now. He's been out in public with it and doesn't seem to mind the feel of it on his head. And every time I hear the thunk of the helmet hitting something during a seizure I am so grateful it is not his head. He has been saved from a few hard falls because of it, especially outside on the cement. It has given us some peace of mind. And yes, he does look like a cute jockey or a polo player as many of you have pointed out!

We head to Chicago next Friday to see the epileptologist at Children's Memorial. I imagine we will discuss what comes next, after this final increase. We do not expect it to lead to complete cessation, so we will need to think about future steps to gain more control.

As I said, it was so nice to get away. We were able to relax and let some of these worries go for a time. It was also wonderful to see Micah again on Sunday. We sure missed him!