Just a quick update with a few keto notes that have been on my mind. Nora is 19 months + 2 days seizure free, getting over a nasty cold/flu and looking forward to Thanksgiving break from school.
Still no Cytra-K and Nora’s keto clinic appointment for last Friday had to be rescheduled because her doctor had a family emergency. We wish him the best and are looking forward to getting a new appointment.
Thanks to Ted’s creative parenting and Nora’s 5-year-old maturity, taking baking soda as a Cytra-K substitute is going smoothly. Ted mixes up 1 tsp of baking soda in about 1/2 cup of water. We give her up to an ounce with every meal and snack. On school days she has one at breakfast, then one with afternoon snack, dinner and anything left at bedtime. No more pukies for awhile, so it must be doing the trick and spreading it out over the day seems to help ease any tummy upset.
To convince her to take it, Ted played Mojo Jojo for several days, telling her that if she takes her baking soda she will have super powers like the PowerPuff Girls to defeat him, but if she doesn’t take it then he can take over the world (he was very convincing!) She gulped it down and attacked!
This morning as we were trying to get to school on time, she said “but I haven’t taken my baking soda yet!” and sipped it down all by herself. Although it will never be a yummy treat, it’s also not torture anymore. What a relief.
I also wanted to share some keto updates and success from other families. I cry when I read their history and their bumps in the road because I know what it is like, but I’m also so hopeful and proud to see them overcome. Good attitudes and stories are contagious. Even though I may never meet most of these families in person, I hope they know that we are out here pulling for them, and I know that they (and our readers) are pulling for us too. We are always stronger together.
- One of the first keto families that we connected with online is nearly weaned off the diet, after 5 long years of struggling with Doose syndrome and fighting for seizure control. I don’t have a blog post with the news, but I’m so thankful to keep up with Fawn on Facebook to get the news as it happens. Jade is out of ketosis! We are celebrating with you!
- Amazing KetoCook mom Dawn posted an update at long last. I had the honor of meeting Dawn at the Charlie Foundation conference over a year ago. She has done so much for keto parents everywhere, but her most important accomplishment is seeing beautiful Charlotte through Dravet syndrome every day and continuing to do everything possible to head off a seizure. We have learned so much from you and we are cheering you on always. Your family is an ongoing inspiration.
- And ketokid Autumn from Fort Wayne is in the news for 18 months of seizure freedom!
We have the deepest gratitude for the support we have received from everyone in our lives, near and far. Here’s to a restful and filling Thanksgiving holiday with our closest ones happy and healthy.