Food and a Helmet

We have had a better week. Micah has been mostly eating well again (finally!), and the seizure count has been under 30 per day for more than a week. Most days have been in the low 20s or even the teens. This is good progress and we pray it continues to improve!

Spaghetti squash "noodles" have become a new favorite, with one of three sauces: pesto cream, tomato cream or peanut. Once the squash is cooked and the noodles removed, it is quite an easy meal. We also think we have a reliable breakfast meal--bread and butter (Next day...I guess not after all). It does look kind of funny because the butter layer is as thick as the bread itself (which is kind of like pound cake made with eggs, butter, cream cheese and ground almonds--yum). For a kid who ate oatmeal every day for breakfast from the time he was about 9 months old until the day before he started this diet in February, variety is not important. We just need to find meals he will reliably eat.

It does look kind of funny because the butter layer is as thick as the bread itself (which is kind of like pound cake made with eggs, butter, cream cheese and ground almonds--yum). Here it has been heated briefly in the microwave so the butter softens and begins to melt.

We finally got him a helmet last week. He has what are called "drop seizures" which basically means that his head drops forward and if they are long enough (1 second +), he sometimes falls down head first and can't get his hands out to stop himself. So, to protect him, a helmet was necessary. He will not wear it all the time, and right now he has to get used to it so we're working up to him wearing it more. I have to get used to it, too. It is such a visible reminder of what is going on. We had put this step off for a while, hoping that the diet would work quickly and completely enough that we wouldn't have to get one. But after a few nasty falls in the past few weeks, it was clearly time to do it. But it's hard. I think about going out in public with him wearing it, and I don't want people to treat him differently or feel sorry for him because of the helmet. He's a normal kid who just happens to have seizures. This is something I have to work through (and let go), because my discomfort is not important when compared to protecting him from having a concussion, and I don't want him to feel self-conscious about wearing it. And he does look cute in it--like a cross between a biker dude and a hockey player.

It's another step on our journey with epilepsy--something we never expected to have to deal with. We celebrated Easter yesterday, and feel encouraged by the signs of new life we are seeing in what seems like a trend toward fewer seizures. And we have to keep on doing what we have been--trying to be patient.

And here are a few Easter morning pictures.