Bittersweet Day

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It was a bittersweet day, village. Our warrior had her hearing aid molds made today and picked out her colors. She chose nude to blend in with her skin and hair color as she decided she did not want it to stand out. They should come in next month. The good news is her hearing loss has stabilized! The aids will help her not work so hard at hearing the higher pitch/frequency sounds as well as language when there is background noise and now in today’s world: masks. She loved learning that they will be like her own AirPods as they have Bluetooth! She will continue first grade virtually for the remainder of the year, as will her brother and sister. Brian and I debated all the pros and cons for quite a while before the deadline to decide smacked us upside our heads today. In the end, we decided we have the opportunity to allow Charlotte’s immune system to FOCUS on the immunotherapy that this Neuroblastoma vaccine trial promises. We can help try to keep her immune system strong and focused on making antibodies against neuroblastoma instead of anything else, so that trumped going back to school in person at this time. I really struggled with this for a while but the truth is...all THREE of them are happy and in a groove with this virtual academy they have been a part of this year. Our hearts just didn’t want any of them, especially Charlotte, to miss out on sweet childhood and being with their peers. Charlotte fought so hard to get there! Finally, next week Charlotte has scans again. We hold our breaths once again but we are feeling hopeful they will continue to reflect our prayers! Thanks for your continued love and prayers for our little girl and our family❤️🌈#Charlottestrong


Taking her hearing test in this sound proof booth but this time I noticed more independence and ownership. She’s growing up. Thank You God
Charlotte said she made a manta ray out of one of the ear mold materials🥰

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