It's been a very long time since I last wrote; I just looked at my last post and couldn't believe it was written almost 2 years ago! The old saying, "no news is good news" has definitely been true in our case.
Oliver has been on the ketogenic diet for almost 2 years now. He has been seizure free for 13 months and continues to be completely off seizure medication! We have had to tweak the diet several times to get it to work this well, especially six months into the diet. Oliver was having a hard winter- he was sick almost constantly, which would throw his body into acidosis, making it very hard to get well. At that point, Jadey and I made the decision to transition him to modified Atkins (MAD), which is still a ketogenic diet but does not require all the weighing and measuring that the true ketogenic diet requires. MAD traditionally does not provide as high of a level of ketosis that the 4:1 diet provides, but we were hoping it would prevent some of the acidosis. MAD has worked just as well as the 4:1 diet for controlling seizures, which is spectacular because MAD is easier to implement. I feel lucky that the diet has worked so well for Oliver. It works for many people, but there are others that have not had success with the diet. I'm extremely thankful that we were connected enough to the right organizations to find the diet, brave enough to try it, and lucky enough to have it work so well.
Oliver's learning has continued to expand at an astounding rate. A little over a year ago, we considered Oliver to be essentially nonverbal- he had about 4-6 words. Now, he uses complete sentences and has thousands of words. He is still hard to understand, but his speech continues to improve as well. The ketogenic diet combined with the lack of seizures have allowed him to benefit tremendously from speech therapy, OT, preschool, and the teaching we give him at home. We are at a wonderful point in life right now, and I am thankful.
Of course, we had a baby not so long ago too! Ari is 10 months old, and he could not be more amazing. I was worried about having him- worried there would not be enough time for all of Oliver's needs, worried that we wouldn't be able to give Ari all the attention that he deserves, and worried about how another child would affect our family dynamic. However, having Ari has been excellent for all of us. Oliver loves him- Ari is the only child he talks to regularly. Oliver sometimes says a few words to other children, but he tends to ignore them. However, he talks to Ari constantly- "Ari look, a shiny lake!" "Ari did you see flag house?" "See it, Ari." "Ari, do you wanna go to Target?" He is concerned for Ari's well-being- when Ari is crying, he tells me, "Mama go get Ari." Ari has been a great addition to our family; he makes our family much better. There are no signs of tuberous sclerosis or developmental problems in Ari yet, so we are hopeful.
Let's hope another 2 years pass before I feel the need to write again!
