slow and steady progress

It's like two steps forward and one step back around here.  Jack is definitely making progress.  I'm still not sure how I survived that first week after surgery, I guess just reminding myself that he won't remember all of this, but the whole thing was ugly and something that no parent should have to go through.  And no child for that matter. 

He is finally playing some instead of just sitting on my lap and screaming.  He is still very attached to me and Jonathan, but does okay now when Jonathan leaves for work.  I even got to go out to our Epilepsy Support group a few nights ago.  He cried when I left, but did okay and even went to bed without me. 

He is still sleeping in the bed with us but we are thinking about trying to transfer him back to his own bed next weekend.  We aren't getting much sleep. 

Today was a rough afternoon.  We weren't sure what was wrong, but guessed at pain by the way he was throwing himself around and screaming bloody murder.  We gave him pain meds and he turned into his normal happy self.  The doc said that he wouldn't need pain meds anymore, but he doesn't know Jack like I do.  Hopefully we will be done with it soon though, he went 2 days without anything at all.  Slow and steady progress! 

The big news that we got at the follow-up appointment is that we will start weaning the diet in 2 weeks!  TWO WEEKS!  We though that it would be 3 months, so the 1st of the year, before we would start this. 

We haven't seen anything that we know is a seizure, though we have seen some suspicious movements, but the doctors think it's just from the surgery.  But I haven't seen it in over a week, so all is good on the seizure front. 

And FYI, putting a child who is on steroids on a calorie restricted diet is just mean.  The poor baby is constantly crying for food.  I've even increased his calorie intake and he is still always asking to eat.  The sweet guy wanted broccoli and eggs and avocado for dinner so that is what he got, but he cried for the 30 minutes that it took to calculate everything out and get it cooked.  And yes, you read that right, he actually asked for specific foods!  He has been talking up a storm, some of which we still can't understand, but he is clearly making progress already.

But back to the diet thing, this means that he can actually eat Thanksgiving dinner with us!  We will have to make a few low-carb dishes, but it will be so much easier!  When the doctor told us that and left the room, Jonathan and I both sat there and cried a little.  For us to be able to eat the same dinner as a family is a huge deal.  Something we have dreamed about, but has never happened.  We can go out to eat and order off the menu.  He can have as much of the things that he loves most, like salmon or steak and avocado, as he wants.  We still can't give him cookies, or cake, or junk food, but he doesn't need that stuff anyways.  And neither do we for that matter.

I find myself a little overwhelmed, given that I have done nothing but keto for him for 19 months.  I have been emailing with the dietitian and to be honest, I'm not even sure how to get that many carbs into his meals.  It sounds crazy, I know, but we are planning on continuing to do the gluten-free thing and it seems like it is either one extreme or the other.  I'm sure I will find a balance in there somewhere, it's just going to take so adjusting to.

 
This is a keto meal.  There is a ton of butter and heavy cream in the eggs and then about 1 tbsp of apple sauce for a small amount of carbs.  He loves strawberries so that is where he can get a few and I of course have some keto cookies that I will continue to make for him but it is certainly going to take some getting used to measuring his veggies out in a cup instead of on a scale.