Amelia update

Had Amelia’s nutritionist appointment yesterday That she fell asleep through. 😂

Before starting the ketogenic diet she has to have several tests done to check for metabolic disorders or underlying health concerns. She will need to be 100% committed to the diet for at least 3 months, with several weight check appointments. We are really hoping this diet will help. Her neurologists (she now has 2!!) are very concerned with how often the seizures are continuing to occur. She did have a couple of days this month almost completely seizure free, we’ll call that a success! First time that has happened since July 12th. However most days we are continuing to have several an hr still. If we get to do the ketogenic diet and it doesn’t work they have discussed the next step being her getting a VNS. Her team of doctors(she now has 7 😬) have also discussed her starting early intervention, but with her being developmentally on track so far I’m not so worried about that. She amazes me daily with her strength through all of this. She is becoming more aware of her body so I think she’s starting to notice something is off before and after a seizure sometimes. I’m so interested in Amelia’s seizures as none of them are the same, have the same triggers typically, or last the same amount of time. Sometimes she can continue like nothing happened right after a seizure and other times it takes a little bit longer for her to come completely out of it. I’ve had a few people ask what her seizures look like, and with not all of them being the same I have made extra efforts to record the past couple of days to help understand the different ones I wish I could post them all at once.

Every person battles epilepsy differently and everyone kicks it’s ass differently. Our little epilepsy warrior is an ass kicker and she will overcome this, one day at a time. 💜

We are still hoping to make this a possibility for Amelia, but we also know everyone is struggling with this crazy year as we are. 💜