Wow Ethen sure felt the love today. He absolutely loved the surprise birthday parade. We really felt the love of our family and friends. It was such a wonderful way to celebrate (watch out crew he really thought this was neat) 😉 we just wanted to say thank you. Each and everyone of you help us get through the journey with Ethen & adddyson.
He woke up to his birthday breakfast (he requested eggs and bacon). Then both got busy with online learning while I did a video conference With Addysons geneticist.
Addysons genetics Doctor was informative. She said she is going to rerun her whole exome sequencing. She said you have 20000 genes. She two years ago there were only about 3000 known genetic genes understood. She said now that number is closer to 7000 so she said it makes sense to rerun it. They will use her dna pull from before. We don’t have to repull it, just renanalyze it to include her new symptoms. About 37genes are related to mitochondrial disorders. So again we know there is a slim chance of figuring this out but hopefully reanalyzing her dna plus the muscle biopsy in June will help connect the dots.
We know Addyson will be going back to the hospital for her overnight eeg in April and then back to the operating room in June. Just waiting On the extact dates in June.