It has officially been a year since our family began fundraising for COTA (Children’s Organ Transplant Association) to assist with transplant-related expenses. This last year has been quite challenging navigating the pandemic with Elena’s intensive day-to-day medical care, doctor visits, medications, ER visits, therapies, school, etc. In honor of our year mark we wanted to share a few highlights from this past year and also let you know we have an upcoming fundraiser this coming month which we’ll share additional updates on.
As expected, Elena continues to have many doctor appointments and this year we added five additional specialists from CHOP (Children’s Hospital of Philadelphia). In particular the Mitochondrial Medicine Clinic, is an invaluable specialty for Elena’s care, as that is her primary medical condition, in addition to secondary clinical support for the crossover of her mito with other body systems. This brings the total of Elena’s medical team to fourteen clinicians! The mito clinic started her on an individualized compound medication with over 15 supplements to help support her cellular mitochondrial function.
Elena has also started to develop more extreme anxiety with doctors appointments and particularly with getting blood draws for her frequent lab order. When possible we request the best phlebotomist in the hospital, to avoid multiple pokes. We also had two emergency room visits to get some due to drops in her metabolic panel and illness. Her kidney function, known as the GFR (glomeration filtration rate) has dropped from 46 to 35 over the last three years, so this is something her doctors continue to closely monitor.
Elena also started attending pre-school for a couple months, but with the outbreak of omicron and her high risk she qualified for medical home instruction, where her preschool teacher visits three times a week. She loves school, her friends, and teachers, so we look forward to the time when she can return to in-person school. We are also eagerly awaiting availability for the Pfizer COVID vaccine, for Elena’s age group. Elena’s multiple medical conditions put her at high risk and this vaccine would provide an essential buffer to protect her body. In the meantime we continue to be cautious in our exposure, wear masks, and monitor the pandemic.
Despite all the challenges of the last year Elena remains a very happy little girl. We are so grateful to Elena’s medical team, therapists, teachers; they are a significant support to Elena and our family. We’re also so appreciative of all the support for “Team Elena” through COTA from friends, family, and strangers who have lifted us in so many ways. We look forward to another year and brighter possibilities.
