Monthly Archives: October 2016

My father used to say that to me over and over and OVER again…spoken like someone who knew. Spoken like someone who–once upon a time–used to care and try hard too. Looking back on it today, I realize now that … Continue reading →

Maybe I just need to accept: 1) There’s no one, anywhere, that wants to help get the answer. 2) Maybe there is no answer. Maybe medicine isn’t there yet. 3) I’m going to have to continue to suffer horribly for … Continue reading →

No popping pimples on your nose!! Love, Mom https://www.yahoo.com/beauty/popping-pimples-on-this-part-1536526855757878.html

What I did, I was so friggen frustrated that my phone deleted my long email to Dr. Prero where I spilled my heart out about how grateful I was he called his doctor friend at CHLA who studies genetics this … Continue reading →

This is the first day in weeks I’ve actually had an appetite…I’m still a little nauseous, but I was able to walk around more today, and even get a little bit done (I made my puppy some homemade dog food–she … Continue reading →

This is a note I just sent to Noah’s pediatrician. I’m not sure what to do, but I’m thinking we should just go somewhere else for his C2 gene testing. I’m just coming up to breathe from this gland surgery…it’s … Continue reading →