I'm sorry for such large gap between updates for Amelia! As time goes on and we continue to navigate through this journey, we feel as if we are out of the crisis or survival period and have now entered a time where we are learning how to manage her disability in the day-to-day realm. All that to say, I've had some people ask about how she's doing and for any updates and so I'm happy to provide one!

Amelia recovered well from her VNS implant surgery. She didn't have any issues at all with healing and she has tolerated it well for the most part (a quick reminder, a VNS is a vagus nerve stimulator that sends an electrical impulse which can potentially interrupt a seizure before it starts if it detects a spike in heart rate. It can also stop a seizure when we manually swipe a magnet over her device). Unfortunately, it has not actually helped her seizures like we so hoped and prayed it would. The doctor has made adjustments on it a couple times, with the latest one being this past Wednesday (6/5), but we are still trying to get the settings right. She'll have had it a year this August 11, and so I'm hopeful that we can still get it fine-tuned to the right amplitude that will help her.

Amelia is still in the clinical trial at Nicklaus Children's Hospital. This summer will be 3 years that she has participated!! She will continue on with the study until the FDA approves the treatment or until we pull her from it. As of now, we haven't seen a huge change in her from her reception of the experimental drug. We don't truly know how much the treatment has helped, since there's no way to judge what things would have been like without it, but we do know that she is still having weekly seizures that disrupt her quality of life significantly and she is still behind in all her development milestones.

We love our Amelia just the way she is, so I don't mean to sound ungrateful or complaining at all! It's honestly just very difficult to watch her continue to suffer from seizures and not be able to help her. They tend to wipe out her appetite and disrupt her ability to sleep for a couple days after while she recovers. She is usually more irritable during this time too (although I don't blame her one bit for that).One positive thing to note is that the VNS adjustment she had this past winter did seem to make her recovery period last less time when she only has one seizure. When she has multiple seizures it's a different story, and so we are trying desperately to figure out how to help her. 

Some positives:

•  We found out the FDA approved the higher dose of the experimental drug for Amelia to start receiving! We are super excited about this and are hoping and praying she will benefit from it. As of now she has not had a seizure since she received this higher dose (Wednesday, 6/5).
• While she is behind developmentally, she continues to make progress at her own rate and it's such a joy to watch her. She is imitating more words all the time and is trying really hard to communicate with us. She works hard in all her therapies and is trying really hard to scoop her food with a spoon and to learn to jump. She is becoming more and more opinionated and is learning how to express herself in a way we can understand. 
• Charlotte's relationship with Amelia has been burgeoning. Watching her not only come to accept her sister for who she is, but to also delight in her has been such a blessing for Josh and I. 
• She is overall just a happy kid who enjoys life. She has an infectious smile and laugh and truly gives the best hugs!