This is a post I have been waiting months to post. Gabriel is officially off the ketogenic diet! It has been a very long and hard part of fighting off the beast that is doose and I am so glad it is over!
From what we can tell at this point weaning the diet has been nothing but good for Gabriel. He is more coordinated, more conversational, more communicative, more interactive, learning more, playing better, the list is mind boggling. Weaning the diet seemed to bring him out of a fog, that we didn’t know he was in. I have some many confusing emotions about the entire diet. It may have helped at the beginning or may have not. We just don’t know. I am beyond elated that it is not controlling every aspect of our lives. It has been so fun to watch Gabriel, try and enjoy food again. He has some quirky behaviors around eating right now that I think will even out. One week he was OBSESSED with Ham, then another time he would only eat oranges, this week it seems he cannot eat enough string cheese. I think he is concerned that a food will go away, so he eats as much of it as possible when we say yes.
The best day was the day I got to give him Macaroni and Cheese. The day we brought him home from the hospital after started keto, he laid on the ground and cried and cried, asking me for MacE ONi. For whatever reason it was one of the hardest part of this whole journey for me. I hated that I could not give him the one thing he wanted. And bless his heart he tried so hard those first several meals to be happy and eat the food. He liked it, didn’t love it or obsess over it, I however sat there crying happy tears with every bite he took.
We still have a long way to go. The good news is he is still seizure free…officially 9 months! We received results from his developmental testing, in some areas he is “normal” for his age level. This is great news! However, still hard news, because the areas he is now average in, he was WAAAAAY above average before! Our hope is that will be to his long term benefit, that he was so far ahead before the seizures started. There are other areas that he is functioning 2 or more years younger than his age. We know this, we live it everyday. Hearing this validated what we are living, but was still sad. The year plus of seizures has taken a lot away from our little boy. But we are still standing, we are still fighting! We will continue to use every resource at our disposal and above all else G is an inspiring and amazingly resilient kid. At the end of the day he is happy little dude, who just loves to have some to play with! (and now a glass of orange juice of a snack is AOK!)