Thanks for all the valuable input everyone! Today I go to interview a potential new pediatrician for the kids. Praying this doctor will be able/want to work with us. My doctor keeps reminding me that working with us folks with rare diseases/genetic disorders/etc. takes more work and time and that is why “most” doc’s just brush us off.
Give My Daughter The Shot,
I know what you mean! I too struggle with what has been lost, trying to find help and my personal concoction for my issues and trying to get help for my kids, on top of just the struggle of everyday life (cooking, grocery shopping, etc.). It is a hard road, but not without times of joy and meaning. Hang in there, one day at a time. :coolsmile: