Adjustment is the word of the day! Diet adjustment, behavior adjustment, sleep adjustment, mommy needs a chiropractor adjustment 🙂
We are excited that Gabriel is getting to wean the ketogentic diet. The process is going to involve the same amount of work preparing his meticiuos meals and is providing the added challenge of learning new recipes with each ratio change. With the ratio change we are getting to pull out some fat and add in some protein and “sugars”. I have a lot of people ask if that means we can add a new food one at a time and sadly it is more complicated than that 🙂
I think I finally realized that best way to describe the keto diet, is that each and every meal/snack is a recipe that has to be followed exactly. Like when you are baking cookies, every ingredient has to be in the right proportion or they won’t turn out. It isn’t
food groups and general calories but the EXACT right amount of E VERY ingredient for every meal.
I got to add 11 grams of apples to his waffle meal earlier this week! To add apple into his meal, I had to change the gram measurements on all of the ingredients in his waffle. I had some waffles previously made but he could not eat the apple with those waffles because they messed up the recipe. He is loving the apples…the added challenge is making sure he eats every bite of the waffles so he doesn’t get too many “sugars”.
The eating leads perfectly into this section. Each time we change a medicine or his diet ratio, serious behavior issue pop up. I am sure it is body being overwhelmed but it is so difficult. He gets overly tired and overly agitated very easily. He reverts to 2 year old type temper issues, just today I had to carrying him out of two separate public places while he was screaming. It is so frustrating and embarrassing. I really dislike parenting through these same issues over and over again. It gets harder and harder each time because he is getting bigger and stronger. Sigh. I am thankful to know from past experience that the extremes pass after his body adjusts but it is still tough.
On the up side he is having a great mornings. Lately he has been very sleepy and kind of out of it in the morning. Now he is waking up, interactive and playing in fun and complex ways. He came to school with me today and actually responded back to a few people who said HI to him. It took him quite a while and it was very quietly but still a great big hurdle! So exciting to see him in engaging in social cues and using socially appropriate behaviors ;)–again things he knew before but lost…so glad to see him relearning or reengaging that knowledge :
Sleep continues to be very sporatic. Some days he needs a nap, somedays he doesn’t. Last night he fell asleep suddenly on the kitchen floor at 6:00 p.m. He still wakes up in the middle of the night a couple days a week. It has been almost 2 years since we have slept through the night for more than 2 or 3 nights in a row.
Chuck has observed some sleeping twitches and strange patterns over the last several weeks as well that have him concerned. Chuck is really good at researching and noticing changes in patterns. We have consultation with the sleep clinic in a couple weeks. Hopefully that will help us find some answers.
MORE IMPORTANT THAN ALL THE ADJUSTMENTS:
7 MONTHS WITHOUT A SEIZURE!