Our beloved Sedona ("Sedonut") was born 3 months early on Aug 5, 2021 and suffered an intraventricular hemorrhage at birth. Before coming home, she spent nearly 6 months in the NICU, underwent 4 brain surgeries and 1 g-tube surgery, and was diagnosed with spastic hemiplegic cerebral palsy early on.
We were never sure whether our little Sedonut would walk, talk, or what quality of life she'd have. But we did intense research and early on did intense treatment and therapies. Sedona did amazingly--she started moving her left arm, learned to roll, sit independently. Her neurologist from the NICU saw her a year later and remarked that her achievements were an absolute miracle.
Just as she came into the world suddenly, Sedona also left suddenly. She was undergoing treatment for infantile spasms (a rare form of epileptic seizure in infants, primarily those with a history of brain injury). The medication left her immunocompromised, so we pulled her toddler brother from preschool and quarantined at home. However, she somehow acquired meningitis (presumably from bacterial gut translocation that her suppressed immune system was not able to fight). On Monday morning (January 23, 2023), in less than 24 hours, our little baby was gone.
We are heartbroken and still shocked at her abrupt departure. She was genuinely doing SO well and even blowing us kisses Saturday night.
Our Sedona was pure love and light. She brought joy whenever she entered the room, showered others with sweet kisses and roars, and was cheeky and funny and clever.
To honor Sedona, the Sedonations from this fund will be used to help underserved families who have infants like Sedona that have had an intraventricular hemorrhage, brain injury, or cerebral palsy achieve their full potential by funding for the amazing therapies and treatments we have been able to find and provide for Sedona over the last year. Many of these therapies and treatments are not covered by insurance or the "right type of insurance" and are cost-prohibitive for those without financial means. We intend to make as meaningful an impact on as many babies as possible.
Our scope is babies between 0-12 months who are at high risk of cerebral palsy. While nothing is set in stone and there are many details to hammer out, we are currently contemplating 3 different modalities:
Post-NICU life (including nursing accessibility and parent advocacy): Advice, resources, and support for families on what to expect during/after NICU life and how to be the best advocate for your child. This modality will be led by Trish Loftis, Sedona's home care nurse, who incidentally was there for both Sedona's birth and passing and who was Sedona's second mama.
Non-traditional Early Intervention Therapy (Non-traditional PT/OT/DMI/E-Stim/Orofacial Myofunctional): Dynamic Movement Intervention (DMI) and Electrical Stimulation (E-Stim) are two types non-traditional PT/OT therapies that Sedona responded remarkably well to. We aim to introduce parents to different cutting-edge therapies outside of traditional PT/OT, and contemplate a series of therapist-led videos and virtual workshops, accessible via the internet, to train parents on how to do these exercises at home so that those without insurance/financial means and/or geographic restrictions can benefit from these therapies that few PT/OTs are trained in and often accessible only at specialty out-of-network centers or Napa Center, where there is an often years-long waitlist and which only accepts specific types of insurance. Sedona's OT, Dr. Marielly Mitchell of Theraplay LA, has graciously volunteered her expertise and time for this modality on the OT side, and Sedona's PT Dr. Jenny Swan will be lending her expertise on the PT side.
Osteopathic Children's Center: Sedona's pediatric osteopath Dr. Kathryn Gill is less physician and more 'medical medium/wizard'. She helped Sedona heal herself in ways that defy scientific explanation. For 34 years, Dr. Gill has dreamed of creating a center to expand physician skills in treatment and help children reach their own miracles. Due to resource limitations, this will likely need to be an online "center".
I know times are tough for many. We would be honored if you could contribute what you are able to for Sedona's legacy and/or share this page. We intend to post regular updates to Sedonators on GoFundMe on her impact.
From the bottom of our hearts, thank you for loving our baby girl, honoring her and her legacy, and helping us hold her light and love.