When I first started ‘Buddy’ on the Ketogenic diet I was sleep deprived, overly stressed and scared I would ruin it and kill him. I know that sounds dramatic, but it is true. Every time I stepped in the kitchen to pull meds or make formula I checked and double checked every number. I even read the recipe, or med doses out loud to make sure I had it right. I still made a few mistakes, but I also made some changes and the mistakes are far fewer than they were. In the hopes that this reaches someone who is in that place right now, I thought I would tell you about those changes.
I went back to my retail roots and idiot proofed our life. Let’s face it, that much stress and that little sleep, I was an idiot. This is where I like to remind new parents and special needs parents that sleep deprivation is a torture technique. I found that reassuring. I know weird, but true, it helped me cut myself some slack. Since my brain was not functioning this is what I did…
I went back to my retail roots and idiot proofed our life. Let’s face it, that much stress and that little sleep, I was an idiot. This is where I like to remind new parents and special needs parents that sleep deprivation is a torture technique. I found that reassuring. I know weird, but true, it helped me cut myself some slack. Since my brain was not functioning this is what I did…
Meds
First, I got a little wire rack and organized his meds. Backup on top, may need in future on bottom in back, and daily used in a cluster at the front. My hands are just big enough to bring them all down together. As I dispense the med I put the bottle back on the shelf. When I am done the bottles are all back in place. I take a quick look at the crusher to double check then put them in their places. This is a triple check system.
Second, I pulled all meds in the evening, when I was most awake. I put them straight into the crushers, and put the morning crusher in a specially agreed upon place, so that in the morning whoever was up knew where they were. We would open and quickly double check in the morning before crushing. If I was awake enough, I would actually run through the list of meds, if I was groggy I would take a count…7pills plus Miralax and pro-biotic, that makes 9, check. On particularly bad mornings I trusted my awake self. Then after administering, I would enter everything into out Totalbaby Ap (http://www.andesigned.net/totalbaby.htm) while holding ‘Buddy’ for his feeding.
Third, I place bottles that need to be called in upside down on the counter. I try to call them in the moment I notice. It doesn’t always happen, hence the upside down bottle. Have I mentioned I am visual person?
First, I got a little wire rack and organized his meds. Backup on top, may need in future on bottom in back, and daily used in a cluster at the front. My hands are just big enough to bring them all down together. As I dispense the med I put the bottle back on the shelf. When I am done the bottles are all back in place. I take a quick look at the crusher to double check then put them in their places. This is a triple check system.
Second, I pulled all meds in the evening, when I was most awake. I put them straight into the crushers, and put the morning crusher in a specially agreed upon place, so that in the morning whoever was up knew where they were. We would open and quickly double check in the morning before crushing. If I was awake enough, I would actually run through the list of meds, if I was groggy I would take a count…7pills plus Miralax and pro-biotic, that makes 9, check. On particularly bad mornings I trusted my awake self. Then after administering, I would enter everything into out Totalbaby Ap (http://www.andesigned.net/totalbaby.htm) while holding ‘Buddy’ for his feeding.
Third, I place bottles that need to be called in upside down on the counter. I try to call them in the moment I notice. It doesn’t always happen, hence the upside down bottle. Have I mentioned I am visual person?
Food
First, I set up a station on my counter with everything I need. At work your tools are handy, why not at home? I got this one from a friend. Storables has lovely clear storage containers. (http://www.storables.com/kitchen/cabinet-pantry-organizers/pantry-bins/medium-wide-stackable-bin.html) I measured the stuff I needed and went shopping. I bought more than I needed, knowing I would return some. I wanted options while I got things set up. Now I stand in one place and mix formula, and cook recipes. I don’t have to expend energy and thought on where I put things last. It is all there: Bottles, nipples, syringes, spoons, whisks, spatulas, bowls, formula, cooking ingredients for Keto diet. I feel safer keeping the Keto ingredients separate, I would hate to accidentally put flour in instead of almond flour. I cannot tell you how many batches of food I have thrown away because I lost track of which ingredients I already put in. Safer to start over.
First, I set up a station on my counter with everything I need. At work your tools are handy, why not at home? I got this one from a friend. Storables has lovely clear storage containers. (http://www.storables.com/kitchen/cabinet-pantry-organizers/pantry-bins/medium-wide-stackable-bin.html) I measured the stuff I needed and went shopping. I bought more than I needed, knowing I would return some. I wanted options while I got things set up. Now I stand in one place and mix formula, and cook recipes. I don’t have to expend energy and thought on where I put things last. It is all there: Bottles, nipples, syringes, spoons, whisks, spatulas, bowls, formula, cooking ingredients for Keto diet. I feel safer keeping the Keto ingredients separate, I would hate to accidentally put flour in instead of almond flour. I cannot tell you how many batches of food I have thrown away because I lost track of which ingredients I already put in. Safer to start over.
Second, I created a recipe book with all the math done, so I could just cook. (The book is just a small phot brag book with index cards for the recipes.) The computer program we have to use for calculating the recipes is a bit antiquated. I really appreciate who ever came up with it, but it is not very user friendly. I find it easier to do calculations and cooking at separate times. Every recipe is calculated to the hundredth of a gram. It is important to be clear headed when coming up with new recipes. In fact, I often ask my husband to take ‘Buddy’ for an outing so I can think clearly and be uninterrupted.
Third, when I do get to the cooking part, I make extra whenever I can. ‘Buddy’ is still not loving solid food. Because I can’t trust him to eat a whole meal, I am still making purees. With a puree, every bite is the right ratio so I don’t have to worry if some ends up in his hair or on the floor. Also, I am able to make a week’s supply at a time. I set a morning aside and make 10 serving batches of 3 or 4 recipes. (10 serving because there is no rounding that could alter the ratio.) I then pour them into ice cube trays to freeze and store the cubes in little lock tight boxes with painters tape on the top marking; Food Type, Ratio, Date made, Serving Size and Calories per serving. I then leave them in the freezer until needed.
Fourth, I have started writing the current recipe for the formula on the lid of the formula can. It occurred to me one day that if something happened to My husband and I, no one would know how to feed ‘Buddy’. So I told a few close people and began marking cans. It is also a helpful reminder when the recipe changes.
I know this all sounds so incredibly overwhelming, at times it was, but it is also worth every moment. This diet has helped ‘Buddy’ get seizure free. Knock wood, we are a year and a half seizure free now. He is down to two seizure meds, off two of the hardest hitting seizure meds, and‘Buddy’ is doing great. I know the Keto diet seems overwhelming, and it is at times, but at least you are DOING something. All that waiting drove me nuts! With the diet I am affecting change. If you are on this journey, my prayers are with you and I urge you to fight for hope, with it comes strength and courage.
Third, when I do get to the cooking part, I make extra whenever I can. ‘Buddy’ is still not loving solid food. Because I can’t trust him to eat a whole meal, I am still making purees. With a puree, every bite is the right ratio so I don’t have to worry if some ends up in his hair or on the floor. Also, I am able to make a week’s supply at a time. I set a morning aside and make 10 serving batches of 3 or 4 recipes. (10 serving because there is no rounding that could alter the ratio.) I then pour them into ice cube trays to freeze and store the cubes in little lock tight boxes with painters tape on the top marking; Food Type, Ratio, Date made, Serving Size and Calories per serving. I then leave them in the freezer until needed.
Fourth, I have started writing the current recipe for the formula on the lid of the formula can. It occurred to me one day that if something happened to My husband and I, no one would know how to feed ‘Buddy’. So I told a few close people and began marking cans. It is also a helpful reminder when the recipe changes.
I know this all sounds so incredibly overwhelming, at times it was, but it is also worth every moment. This diet has helped ‘Buddy’ get seizure free. Knock wood, we are a year and a half seizure free now. He is down to two seizure meds, off two of the hardest hitting seizure meds, and‘Buddy’ is doing great. I know the Keto diet seems overwhelming, and it is at times, but at least you are DOING something. All that waiting drove me nuts! With the diet I am affecting change. If you are on this journey, my prayers are with you and I urge you to fight for hope, with it comes strength and courage.
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