Happy Thanksgiving!!

Our families definitely have a lot to be thankful for this year. We are so grateful for Alivia's strength and determination!

Alivia has been home since November 3rd and has been getting settled to a new 'normal'. She has started physical, occupational, and speech therapy that will require 3-4 appointments a week for the next couple months. She is still very weak and tires easily. She is forgetful at times but doesn't get frustrated with herself yet. Which is great! She has received an infusion of Rituximab which is an immunosuppressant that places her at risk for more infections and sicknesses. Next week she will have another infusion up at OHSU Doernbecher Children's hospital in Portland. There will be numerous doctor follow ups and visits with gastroenterologist, neurologist, psychologist and trauma follow ups. Alivia will have another MRI, EEG, and follow up at the 6 month point to determine if she needs additional infusions.

We are hoping to have discussions in the upcoming weeks about how her slow transition to school looks which may include online courses at first.

Thank you everyone for your thoughts, prayers, texts, and most importantly being cheerleaders for our Alivia as she continues to heal.

With appreciation and love,

Erynn, Angie and Stacy

UPDATE: November 1st, 2023

Alivia is walking!!! The strength of this warrior is unheard of! This picture above is symbolic of her accomplishments, love, and happiness. While her brain is still healing, she has been able to have conversations with family and friends. Speech and motor skills are slowly coming back. Her most recent MRI shows no concerns! She will get another round of IV immunoglobulins today and tomorrow. She will hopefully get her central line catheter out of her neck today too! There is a good chance that Alivia could be discharged to GO HOME in the next couple of days!!!

Many have asked the big question of 'how or why' this happened. Her diagnosis was autoimmune encephalitis. Her team is currently testing for a specific autoimmune disease disorder. Her body attacked a portion of her brain and her entire brain become inflamed, irritated, and then things weren't working correctly. Alivia will have to continue with occupational, physical, and speech therapy.

Everyone is so incredibly proud of Alivia. She still has a long journey of rehabiliation ahead of her. But, we are all hopeful and optimistic that she will make a full recovery.

Thank you all for your support, prayers, positive thoughts, helpful hands, and donations.

With love and gratitude,

Erynn, Angie, Stacy

UPDATE ON ALIVIA!!! October 27th, 2023

What an incomprehensible week it has been for our family. Despite everything Alivia has been through, she, as Dr Clare would say, is "crushing it"! There is a long road ahead, but it is no longer as uphill as it once seemed.

Alivia is being treated for a possible autoimmune encephalitis and very slowly responding to the multiple treatments including plasma exchange and steroids. Her breathing tube has been removed and doing well with that. She is able to move but unable to talk yet. Numerous tests have been sent out to special labs, but results won't be back for 1-2 weeks.

Our new extended family here at Doernbecher's OHSU pediatric ICU, coupled with all your love, support, prayers, and thoughts have played such a huge part getting Alivia through this. We don't know if we will ever be able to thank anyone enough for everything!!

With love and gratitude,

Erynn, Angie, and Stacy

On Thursday October 19th, Alivia experienced a bad headache that led to vomiting. The next day, she started having speech impairments. Alivia was sent to the emergency department where her condition started going downhill rapidly. Test after test ruling out every possible condition/illness/disease, her health changed drastically and she become unresponsive.

Saturday October 21st, the decision was made to life flight Alivia to OSHU Doernbecker's Children's Hospital in Portland, Oregon for specialty care. Her team attempted antibiotics, antiviral medications, antibody therapy and continuous testing. Unfortunately, there are still no answers to the why or how.

That brings Sunday October 22nd, where Alivia suffered two seizures which then caused her breathing to slow down. Alivia's breathing started to decrease enough that her team recommended to intubate her with a breathing tube which she is doing well with.

If you have been fortunate enough to spend time with Alivia, you will agree that she is a strong, sweet, caring and resilient human. Her parents have been by her side with strength, love and hope. I ask for our family, friends, neighbors, strangers to come together and link our arms in support of this family and our beautiful Alivia.

Your support will aid in the financial burdens of out of pocket medical costs, life flight transportation costs, lodging, etc.

With all our love and appreciation,

Erynn, Angie and Stacy