So things have been kind of interesting around here concerning the diet.
A few weeks ago, I got the go ahead from our dietitian to move Ben to a regular, age appropriate diet.
|What I hoped would be Ben's last Ketogenic meal.|
I was super thrilled and that day made him a pb&j for lunch.
I used freshly ground p.b. and an all natural jam with no added sugar.
This little guy just didn't know what to do. He didn't think it was his food even though it was sitting right in front of him. He kept asking if it was mine.
When I finally convinced him that it was his he didn't know what to do with it. You'll notice in so many of these pictures both of his hands are up at his sides like he doesn't dare touch anything.
Since we have basically fed him everything for the last 2 1/2 years so he will get every stinkin' tenth of a gram of food in his bowl he didn't know how to pick up his food :(
He seriously tried to just bend over and use his mouth...kind of funny but it also broke my heart :(
Eventually he got the hang of it though :)
And then I honestly don't know who was happier...me or him :)
He asked for permission before every bite by signing "more" and waiting for my response.
He loved the cars plate that he hasn't used in forever.
Then it was on to the applesauce...
Same thing...didn't know what to do.
But once again, we got it.
Then of course, I posted that he was eating pizza on Halloween.
Ben had been due for a cluster and if I would have thought it through more carefully I would have waited to go to regular meals until after his cluster. Halloween morning he had his cluster which we stopped with the diastat. Then, the next day he had more seizures as well as the day after that. On the fourth day he had another cluster. To have seizures that many days in a row, especially after having diastat, was just not right. On the third day of the seizures, I made a significant realization. With the change in the diet I had been forgetting to give him his meds. It had just been such a habit to crush and add the pills to his meals as we measured them and so to have that routine thrown off made me totally forget the meds. Yikes! Also, after the third day of seizures I decided to go back to his old meals...I just wouldn't weigh them. I threw together 15 meals in about 10 minutes that night which was so cool and freeing to not have to put everything on the scale :)
That is what we have been doing ever since and Ben made it almost three weeks without a (big) seizure. I'm pretty sure he hasn't done that since before the diet...possibly three years.
This last weekend he finally broke his streak of 18 days seizure free. We knew it was coming but we enjoyed the break while it lasted.
So now, I feel pretty good that Ben did so well while his ratios were way off and he was having a whole lot more carbs than proteins and fats the last few weeks. Now that he has had a cluster I think I will feel safe to slowly start introducing new foods...slowly being the key word :)
I will keep you posted on how he does.
It is very exciting to think however, that Ben is officially off the diet!!!