Quick update

Hey everyone! I wanted to give all of you an update on Lily and how she’s been doing on the Keto diet. So far, it has been working very well for her. We have noticed a reduction in seizures and that she’s a lot more alert and aware of things than she used to be! She had a follow up appointment with our Keto doctor, Dr. Kosoff, yesterday at Johns Hopkins. He was pleased with how she’s responding to the diet so he decided that we can start to eliminate (very slowly) one of her seizure meds!! WOOT! The protocol will be to drop the dose very slowly over the course of two months, with the goal of completely eliminating it. She will still remain on her other seizure medicine for the time being. We are hoping that by getting her off this medicine, we will see more alertness and awareness emerging! So, please be praying for that!!

With the keto formula, however, comes some tummy issues. We have had to find a new pediatric gastro doctor because the one we have been seeing here in Lancaster switched to a different hospital system and for some reason we can only see him in Delaware now because of our primary insurance. It makes no sense to me whatsoever, but this is an example of how the insurance system is just broken. So, we have been able to find a new pediatric gastro doctor in Hershey and Lily will be seeing that doctor in May.

In other news, we are getting ready for Bryce’s high school graduation and eventually starting college at University of the Arts in August! It is so hard to believe this is all happening!! But, we are so proud of him for how he’s been able to come through everything we’ve had to deal with over these past seven years and is ready to move on to the next natural chapter of his life. We are so happy for him because we know he is pursuing something he is passionate about (he will be majoring in Music Business and Technology, and eventually wants to be a sound engineer/producer) and he’s really looking forward to life in Philadelphia. I am happy that it’s only a train ride away! 🙂

Of course, we are always so grateful for the love and support we receive from all of you! We love you!

 

 

 

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