Levi has been on the ketogenic diet for almost six weeks now. Parts of it are immensely frustrating while others are a light in the dark. Don't get me wrong, the diet itself is not really difficult. In fact, it's much much easier than I had anticipated. The more comfortable I get with calculating and making his meals, the easier it gets. The early days of weighing and measuring at every meal are over. I make up a few days worth of meals at a time so I just have to pull them out of the fridge and maybe warm them a little depending on the meal. His favorite, and mine, right now is peanut butter mixed with whipped cream. This blessedly small meal meets all the qualifications for fat, protein, carbs, and calories allotted for one meal. He likes the taste and texture, and I'm just thrilled to have found something he actually wants! He's not a big eater. This is one of the most frustrating issues we are having right now. He's never been a big eater, but I was hoping that once he was weaned completely off Topamax his appetite would come back full force. He took the last pill on Monday, with still no significant difference. When he wants to eat, it's super easy and he does a great job! But when he doesn't, it's a battle of wills that I would like to say I win all the time, but I'd be lying!
I know I mentioned before that he gained a pound within one week and I expected, and hoped, that his daily calories would be reduced because it seems that when he doesn't eat everything, the seizures go down. Well, this didn't pan out. The dietitian wanted to wait another week to see if he continued to gain weight, but he's maintained around 19.4 pounds, so the calories remained the same. I've started documenting on the seizure log when he doesn't eat all his meal. I should have thought of that a long time ago. This week the seizures have gone down into the 50s and 60s! Unfortunately the last two days have been gradually increasing. Interestingly enough, he has been finishing all his food on those days. We have a neurology appointment on Wednesday that will hopefully shed some light on the situation and lay out a plan. I like plans. Groping in the dark is not fun, but something I've found myself doing much too often of late.
So as you can probably tell, I've been feeling more of the frustration today than excitement. I'm so weary of counting seizures, overanalyzing everything, forcing food, and wondering, wondering, wondering what I can do to make it stop. I really need to let go and rely on God and wait for His timing. I know He has a plan and everything will work out as He has ordained and I don't need to worry. If I know all these things, then why is it still so hard? Why do I still struggle to take control when I have no control? In the world of epilepsy, there is no control. The sooner I learn that the better. I need to focus on the positive.
On the positive side, Levi is holding his head much better. He smiles all the time, kicks his legs and moves his arms, swipes at toys, LOOKS at toys, enjoys sitting in the high chair with toys. All of these are things that he either could not do at all, or with very limited success, just six weeks ago. When I hold his hands to help him walk across the floor I don't have to nudge his legs, he KNOWS what they are supposed to do! He can lay on his belly, prop on his elbows, and lift his head to look around. When I look at him, I no longer see huge sad brown eyes looking back with a blank, dull, and drugged stare. I see bright eyes smiling back at me! And then today, I put him in the Bumbo chair, which we have not used in a while, to help him practice holding his head. He did well! Of course he would lean to the side or front, but was able to pull back up to center. At one point he leaned forward so far his face was resting on the tray. It was everything I could do not to reach over and lift his head for him. I wanted to give him some time to do it himself, although I didn't think he'd be able to. Just as I was about to give in, that little head inched up and he brought it all the way up and in the center!!! I am not ashamed to say I bawled like a baby. Some moments, like this one, are frozen in time. This will always be a ray of sunshine in the darkness. It can only get better from here!
I know I mentioned before that he gained a pound within one week and I expected, and hoped, that his daily calories would be reduced because it seems that when he doesn't eat everything, the seizures go down. Well, this didn't pan out. The dietitian wanted to wait another week to see if he continued to gain weight, but he's maintained around 19.4 pounds, so the calories remained the same. I've started documenting on the seizure log when he doesn't eat all his meal. I should have thought of that a long time ago. This week the seizures have gone down into the 50s and 60s! Unfortunately the last two days have been gradually increasing. Interestingly enough, he has been finishing all his food on those days. We have a neurology appointment on Wednesday that will hopefully shed some light on the situation and lay out a plan. I like plans. Groping in the dark is not fun, but something I've found myself doing much too often of late.
So as you can probably tell, I've been feeling more of the frustration today than excitement. I'm so weary of counting seizures, overanalyzing everything, forcing food, and wondering, wondering, wondering what I can do to make it stop. I really need to let go and rely on God and wait for His timing. I know He has a plan and everything will work out as He has ordained and I don't need to worry. If I know all these things, then why is it still so hard? Why do I still struggle to take control when I have no control? In the world of epilepsy, there is no control. The sooner I learn that the better. I need to focus on the positive.
On the positive side, Levi is holding his head much better. He smiles all the time, kicks his legs and moves his arms, swipes at toys, LOOKS at toys, enjoys sitting in the high chair with toys. All of these are things that he either could not do at all, or with very limited success, just six weeks ago. When I hold his hands to help him walk across the floor I don't have to nudge his legs, he KNOWS what they are supposed to do! He can lay on his belly, prop on his elbows, and lift his head to look around. When I look at him, I no longer see huge sad brown eyes looking back with a blank, dull, and drugged stare. I see bright eyes smiling back at me! And then today, I put him in the Bumbo chair, which we have not used in a while, to help him practice holding his head. He did well! Of course he would lean to the side or front, but was able to pull back up to center. At one point he leaned forward so far his face was resting on the tray. It was everything I could do not to reach over and lift his head for him. I wanted to give him some time to do it himself, although I didn't think he'd be able to. Just as I was about to give in, that little head inched up and he brought it all the way up and in the center!!! I am not ashamed to say I bawled like a baby. Some moments, like this one, are frozen in time. This will always be a ray of sunshine in the darkness. It can only get better from here!
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