Still Slogging Through

We've been home for three days now, and while it feels really good to be here, this diet is a LOT of work when we are the ones who actually have to weigh everything.

Here are a few more photos from our stay in the hospital. Micah spent much of the time there sleeping.

Here he is sleeping in his big-boy hospital bed.

We finally figured out that he ate better in the lounge than in his room.

My parents came to be with us while we were in the hospital.

Yummy, yummy hospital food! This was a typical meal he ate while we were there.

Starting from the top and going clockwise: 

mayonnaise, heavy cream, applesauce, sour cream, more heavy whipping cream.

We had fun there, too. Here he is playing in the lounge with Grandma and Grandpa.

We have discovered that Micah just will not eat the cream that is a big part of this diet (as you can see from the photos). He is now suspicious of any white, creamy stuff. He never has been willing to drink milk, and so he won't drink the cream, either. Some kids mix it with water and do drink it.

We do have other options, they're just more labor intensive. We have something called KetoCal, which is a supplement balanced for the ketogenic diet and can be used as a sort of flour to bake and cook with. It looks and smells like baby formula, and children who are not eating solid food or who are tube-fed do use it like formula.

KetoCal allows him to have pancakes for breakfast and pizza for supper and still be on the diet. Another thing we've discovered is shirataki linguine noodles, which are made of tofu. We can get them at Meijer, and they come packed in water. You drain and parboil them and then use them like regular pasta. He had "macaroni" and cheese for supper last night (cream, cheese, butter, shredded carrots and cut-up shirataki pasta). He ate it up, but the pasta portion was a bit skimpy. We'll increase that next time he has it and he will enjoy it more, I think.

KetoCal is great for Micah's eating, but it takes a long time to prepare his food. On Friday night I made pizza for him, one to eat then and two for the freezer. Each approximately 5-inch pizza is a complete meal in itself.  It probably took an hour and a half to make. Worth it, but it makes food prep a whole new thing. It kind of feels like we have to choose between cooking for ourselves and cooking for Micah. So we've been eating catch-as-catch-can. That's ok for now, and I'm sure we'll settle into more of a rhythm. In some ways it feels like it felt when we had just brought Micah home after he was born--so much of our energy goes into his eating.

Admiring our handiwork; Micah is ready to eat.

A close up; nice and greasy!

Here he is eating some blueberry pancakes. They also went down easily!

More, please.

What makes it harder is that he's not having noticeably fewer seizures yet. We don't know if or when that might change, but it feels like it needs to happen soon. It has been almost a week now, and we're ready for something to change.

One thing that might be contributing to it is that he has not been able to take his medicines consistently. We have tried many things, but they keep coming back up. The reason is that he has to take the carb-free versions of things, and for one of the meds, that means crushing some very bitter pills and getting them into him. But they make him gag. And it is pretty bad, I must say, after having tasted just a bit. So, we've resigned ourselves to him taking the sugared version for a bit, so he at least gets it into his system. All the meds went down well with minimal complaining and no gagging tonight; that is a victory!

So we continue to wait. We'll probably be tweaking the ratio this week, increasing the fat to carb/protein. We are all sleeping well, and Micah's energy is back for the most part. He napped only his usual half-hour again today. David and I are eating leftovers and pre-packaged food these days--we have to decide between cooking for us and cooking for Micah sometimes, which is totally fine.

We're all ready for this to settle into some kind of normalcy. And that will come with time, just like it did when Micah was first born.