An Update

Yes, we're still alive and kicking! I just haven't gotten around to posting for a long time. Micah is feeling and eating much better than he was. The supplement (potassium and citric acid) for acidosis has been doing its work and we can tell a huge difference. Seizures remain pretty much the same.

Two weeks ago we consulted with our doctor in Chicago about next steps. We have begun to reduce one of Micah's anti-seizure medications already. After we return from the Pittsburgh Mennonite Convention the plan is to begin a new medication. Other children have had some success with this med, so we're trying to stay hopeful. But that is so difficult. This whole last year--yes, it's been more than a year!!--has been an exhausting roller coaster of hope and despair as we tried new treatment option after option with little success, until we began the keto diet. It has helped a great deal, but even that has left us wanting more control! So, how much hope do we put in this next drug? How can we steel ourselves for it not working, or even worse, for Micah to experience a serious side effect? Holding all this in tension is exhausting, to say the least.

We have had a good week in Pittsburgh, but I am very ready to go home tomorrow! Micah has been his usual fabulous self, enjoying the children's convention childcare and even sleeping pretty well, considering how different the conditions are than at home! And I am very ready to be back in our own kitchen. We had a small fridge in our hotel room and we brought along an electric skillet, so we've been cooking in-room. My mom had prepared a bunch of batters for one of Micah's favorite meals, cheese quesadilla (thanks, Mom!). We had also made many batches of macadamia nut and cheese crackers another favorite. Most of his snacks were macadamia nuts and cheese. Did I mention that this diet isn't exactly healthy on its own? We'll go back to some fruits and veg once we get home, but we had to go with what was easiest to eat on the go. He has eaten very well all week.

So, we have some changes coming up with medication, and are praying for no side effects (or at least nothing serious) and that this med might give Micah more relief from his seizures.

This continues to be a very difficult journey for me, personally, and for our family. Sometimes I do not think I am strong enough to survive the battering my emotions have taken. But I've made it this far, so that is encouraging! We can often deal with more than we ever thought we could. And all of you out in blogland have also helped me make it thus far. Thank you for your continued prayers on our behalf.