Lanier Landing

The tent is working for the most part. Whoo-Hoo! Oliver is sleeping fairly well and the dancing elephants are gone (THANK GOD, couldn't have taken that much longer). I think being in the tent helps him go back to sleep if he wakes up in the middle of the night due to a seizure whatever. He is still awake more than we'd like but, it is an improvement. Sleep issues are very common with TSC so I think we also have to adjust our expectations a bit.

Good news about the seizure count! His seizures have decreased from 10 on Thursday to 2 today. We are thankful. Hopefully, the increase in the med and/or the diet will kick in and the seizures will stop completely.

I am still working very hard on the diet. It is still eating up a crazy amount of time. I met another mom (Karen) in Wilmington who has a kid on the keto diet. Now I've met the only 2 moms (that I know of) in town who are doing this diet. Anyway her son is 5 and she is a nurse. She had some great recipes and tips. Since they started when her son was a toddler she has some good ideas for that age group. She also said it took 2 months for it to really work. That was encouraging for me to hear because I am anxious for results. The hard part is she told me they haven't been out to eat in 2 1/2 years (since starting the diet) and family meals aren't realistic for them. I think I underestimated how many areas of our life this would bleed into. There are just so many good things we have to say "no" to. That is hard. I am hoping, over time, we can learn how to make family dinners work. It is MUCH harder than it might seem to be eating 2 different meals at the same time, all prepared by the same person, without a terrible tantrum.

Please keep praying for us as the marathon continues.