River’s Story

Site created on January 17, 2024

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


You can read journal entries to see updates about River, look through the gallery to see photos, and write Well Wishes for the family. Please note that Tributes go towards this site, CaringBridge, and not directly to the family. 

Newest Update

Journal entry by Kelly Bare

Hi all! Quick update to let you know how River’s EEG went yesterday. River was a champ and slept through most of the 2 hour test. The good news first is that it showed no seizures! The less that great, but also not bad news, is that it did show he his brain was “active.” This means that he is at a higher risk to having a seizure. However, this can change as his brain continues to develop. For example- this wasn’t present in his previous EEGs. He could grow out of it but also it is not harmful. It is just a risk factor we will be aware of and they weight adjusted his medications to be cautious. He will have another EEG at 6 months to see how he is doing. Our prayer for him right now is that the medication will continue to help his brain grow and heal. It went through a lot! His head is still on the small side, so we’d like to see some more growth as he starts to work his way onto the growth curve. He is now in the 5th percentile for weight and length! (He was in the 1%, so we’ll take it!) Overall, he is doing really well growing and developing. He will continue with PT and OT to make sure he continues to hit all of his milestones. He was even sweet to give one of his pacifiers to his kitty Helen. She likes to keep watch over him and has started playing with her paci in her mouth like River! 

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