Quick Update

Hey everyone! Just a quick update tonight. Lily had a routine visit to our new neurologist at KKI today. We hated to say goodbye to Dr. Burton, who had been Lily’s neuro from the beginning, but she has moved on to research now. So, we got to meet Dr. Ismail today and she was great! She took her time getting to know Lily and asked a lot of questions about her. We’re not changing too much in the way of anti-seizure medicine at this point. Everything seems to be doing its job and a point comes when too much medicine doesn’t really help the seizures. For now, they are pretty well managed (they will probably never be 100% stopped). We’re going to increase the dose of one of her medicines and see if that helps at all, and then she’ll have an EEG to see if the new dose is helping. We also saw Dr. Ewen, who is the attending doctor and oversees all patients who have seizure disorders. He came in and talked to us about medicine options, and suggested a diet called the ketogenic diet. We’re going to talk to the GI doctor about this in May when we have our appointment.

Otherwise, Lily is doing pretty well overall. She is so tough! We’re going to be trying out the Easy Stand glider at Schreiber in a couple of weeks. If it’s appropriate for her, we will begin the game known as “deny, appeal, deny, appeal, deny, figure out how to pay for it because we’re out of appeals.” Ha. I’m trusting God that we’ll get it somehow!

Thanks again for all of the support. We recently received an Isaac’s gift card from a special person! We’d like to say thank you (you know who you are)! We LOVE Isaac’s!! Yum!

Here are a couple of recent photos! 🙂 Lily’s pink curl is my favorite thing in the world!!



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