Some Progress (we think)

In the past week or so we have had some better days. Micah is still having far too many seizures, but there are significantly fewer than we have seen in the past few months. We have had no days where he has had more than 50, which, for those of you who have kept up is way less than the 100-150 we were seeing. On Wednesday evening, we increased his fat to carb/protein ratio yet again to 4.25:1. He is still eating pretty well, but the number of dishes he is willing to eat is not very large. He eats pretty much the same thing every day: peanut butter (and coconut oil) and fruit/Greek yogurt/oil for breakfast, pizza for lunch and eggplant parmesan for supper. Eggplant is a great sponge for oil and it is low in carbs for the volume. We can sometimes sneak a different meal in to vary it so he doesn't get too tired of his options.

So, it's beginning to feel like it might be worth it to go through all this work. It is still hard, though. And we occasionally get a sad feeling about not being able to share our food with Micah. For example, tonight we will be having fresh, homemade pita bread and falafel with tahini sauce for supper. Micah would LOVE that meal, but it's just not in the plan.

We are hoping that this new increase will give us some better control. We met with our keto team a week ago in Chicago (dietitian, social worker, nurse practitioner). Though we didn't learn anything new (we didn't expect to), it was good to check in with them again. Micah's blood work all looked fine, with only one level bordering on too low, and there is a supplement for that if it drops further. We did learn for sure that there is only one more increase we can do after the current one. After 4.5:1 the child usually can't get enough protein from the diet to grow properly.

We are encouraged by what we have seen in the past week or so but we still want more improvement! Micah is happy these days and doing just what a two-year-old should--exploring everything. I had to call poison control last week when he climbed onto the piano bench to reach a little bottle of hair clipper oil that I had put there and forgotten about when I gave David and Micah haircuts. I was on the phone and when he was quiet for too long, I went to check on him. He was standing on the piano bench and chewing on this little bottle, with oil all over his hands and face. Now he is supposed to have lots of oil in his diet, but not petroleum distillate (DANGER: HARMFUL OR FATAL IF SWALLOWED, screamed the bottle). He seemed fine, but I called just in case. They reassured me that probably the worst thing that would happen would be vomiting, and that from the tiny bottle that he got into there was probably not enough to do any damage. And he was just fine--no ill effects. But it scared me!

He loves to play outside these days, and we can't go from car to house or vice versa without a sojourn to the back yard. This is fine with me! I am so glad that he enjoys being outdoors. He likes kicking the soccer ball around the yard, running, finding leaves and other random yard stuff, digging and raking, playing in the sand and riding on daddy's shoulders while giggling madly. As soon as we go to get him out of his car seat, he begins chanting, "Shoulders! I like shoulders. I like Daddy. I want shoulders", etc. I sometimes carry him, too, but Daddy has more stamina (it's tiring running around with almost 35 pounds on your shoulders).

All in all we're doing pretty well these days. Life has some semblance of its rhythm back, for which I am grateful. We are enjoying Micah very much at this adventurous age (minus the poison stuff, of course), and are grateful for even a bit of progress.