Tags » Neurofibromatosis

Be prepared..

Ever since the day my daughter was born, she has proven to be unfailingly … unpredictable. If I thought she would act a certain way, she would always pick the other. 1,523 more words


Teen with chronic disease, caught in custody battle, returns home

KANSAS CITY, Mo. — A teen battling a chronic disease and caught in a custody battle between his mother and the state of Illinois is back with his family. 423 more words


The Downward Spiral

For the vast majority of my life I have been down. Four years ago I finally took the initiative to go see a psychiatrist because after over two decades I could not take it anymore – the overwhelming loneliness and sadness had taken their toll on me. 964 more words


The CT Scan



As I get one step closer to figuring the plan with my jaw out, I get to take another test..Oh, joy! This involved me going into the city to Loyola (it had to be a very specific CT scan with 3D imaging). 302 more words

Doctor's Visits


OK, so my daughter’s marks are not from neurofibromatosis.
They’re from lemons.

It appears that her skin was exposed to lemon juice before going out into the sun, and it caused chemical burns all over her face and legs. 319 more words



The best piece of advice I’ve received from other parents is to leave well enough alone. If your baby is quiet, don’t give her a toy. 803 more words


Anticipation leads to frustration!

I was looking forward to today for over a week now!  The stitches were coming out of my foot!  Finally, I’d be able to walk flat-footed again.  475 more words