Thursday, February 16, 2012

been awhile

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

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