so since my last post, my daughter was hospitalized, my son had 3 shots and i feel like crap. my daughter had a focal seizure last friday and had weakness in her legs. she was hospitalized overnight for observation and released the next day. the thing that sucked was theu transferred her to a hospital 30 miles away. Joey had to have 3 shots on Tuesday. I dont know who was more traumatized him or the nurse giving them to him. I am supposed to get my swollow test but with the way i feel i think i will reschedule again. Feel like crap and if i have to drink strange stuff i might puke.
Ok now an EB update or ramble. I can't remember if i said this before, I am the only one that is known to have EB in my family. My kids are EB-free. They do carry the gene. I have JEB-nH. When i was diagnosed i was diagnosised with EBS subtype unknown. Of course in 1980 when i was born not alot was known. It took them 2 yrs to figure out what was wrong and then when they did the dr looked at my mom and like HUH? My dad had to carry a piece of paper with my diagnosis written on it cause he couldn't pronounce it. I was born and got most of my early medical care at a military hospital. At least now some drs have heard of EB, but have never seen it. Well gotta fixx the baby breakfast. Later