Hello Everyone, 

I wanted to update you all on Aurelia. She is doing very well. November and December was a shitshow!!! She was struggling greatly, there was so much issues and uncertainty regarding the direction of her medical and her health. We were able to put the cancer scare and liver transplant behind of us and move forward. Aurelia did develop a syndrome called Von Willebrand Syndrome. The BiVADs are causing her blood cells to break which is causing her blood cells to not make a protein that is crucial to clotting. So this explains why she was bleeding so much last month. Plus her immune system went on attack mode since the BiVADs so she needed to be placed on immune suppression medication to calm down her immune system. This will help prevent her body from attacking her new heart once she is blessed with a new heart. 

As of this month, January, Aurelia has been doing so well!!! She still struggles with bleeding and discomfort from blood clots but she has made great progress with her overall outlook with her situation. 

Aurelia started back with school work and meeting with her teachers daily. Aurelia has been laughing and playing and telling jokes again. Music can be heard coming from her room daily. Plus Aurelia enjoys singing for the whole unit. I walked into the unit the other day and I could hear her music and her singing and laughing with the nurses from several rooms down the hall!!!! lol I’m was so happy and I was laughing. 

Aurelia has earned points and she used her point to have a Harry Potter trivia with some of the staff. It was a 12 questions trivia which was recorded and will air in the hospital for all the kids to watch this week. Aurelia was teamed up with her Music Therapist and they played against two of her nurses who are Harry Potter Fans. Leading up to the trivia, there was so many Harry Potter questions between her and all the staff. That day, was filled with so much laughter and giggles. She had so much fun. BY the way, Aurelia and her music therapist won that game with the last and final question. 

I’m so happy and thankful that Aurelia is in such a great spot and is doing well!!! Thank you everyone for all of your prayers!!! Prayers really do work!!!! Thank you God for providing the staff with guidance and knowledge to support Aurelia. Thank you God for giving me the strength to continue to advocate and speak with the medical team to support Aurelia!!! Thank you God for providing Aurelia and me with such an amazing family friends and supportive community who love and support us!!! 

I also want to update everyone on Quinn. Quinn was faced with a difficult decision regarding school. Quinn was offered to attend a school field trip to the Big Island for two nights and three days. Quinn wanted to attend the field trip but after much talk and discussion with different staff at Kamehameha School, Quinn made the decision that she wasn’t ready to travel off island with her school. I’m proud of Quinn for hearing out everyone and discussing her concerns and she made the decision to not go, she made the decision all by herself. Quinn is growing up so fast and advocating for herself as well!!! As Quinn navigates these past several months without Aurelia and me, she’s doing such a great job with school and soccer!!! So proud of Quinn for being so strong and positive!!!!