Olivia’s Story

Site created on August 16, 2018

Welcome to Olivia's 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. 
   Also, we hope our journey helps other families  going through a similar situation. You are not alone. Please seek out all the advice and help you need, and be the strongest advocate for your children. Thank for visiting.

Newest Update

Journal entry by Stephanie Schneider

We met with Olivia's wonderful Opthalmologist two weeks ago.  She will need glasses in coming months, and that process will begin when we see him this winter. 
  Olivia is having IVIG #2 today.  She definitely needs it, as she began having a cough and runny nose this week. She will have her next one on November 9th, and then she will switch to weekly sub Q at home.  
  On Monday, Olivia has another appointment with her Opthalmologist, because he wants to see her without eye dilation. Then, we will be heading to UVA to meet with her Neurologists.  Afterwards, we are meeting with the genetic counselor and Olivia's little brother, Myles, will be getting tested to see if he has AT, is unaffected, or is carrier for the gene. 
 Additionally, Olivia is continuing her occupational and physical therapies.  She will now be starting speech therapy as well. 
   We are working on embracing our new normal. While we work on this, we are going to look into some play therapy to better support Olivia. She is showing some signs of stress from all of the appointments and procedures, and we want to help her cope in the best ways possible.
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