When I think of my little girl I think of my life as a child, the only thing I have to compare it to, I think of a funny little girl who is running out side, swinging from trees and hanging out in the barn petting her horses, riding the dog, chasing the butterflys.
I think this is how it should be. When I had her, I had all these plans, to have a little girl to hang out with dress up and to hold and to leave a legacy of me, I felt so proud to see her for the first time. She was the Joy I had dreamt of for so long. Little did I know a long battle for her life and for time with her would ensue.
At the age of just a few days we all knew she was differant, she was having a hard time just eating, and the result was a small baby that didnt thrive, and frequent pnemonias, we took her here and there and saw him and her, and got no real answers, we just got more and more lost feeling and she just got smaller and smaller.
After three states, five hospitals and many doctors, we took her to a good state university, and a young doctor saw her special need for a good set of tests and some food, time to heal her now inflamed lungs and and ENT consult. She was diagnosed, as having a posterier laryngeal cleft, it was repaired and we thought wed have a now normal baby.
Her next move was a stroke, some big clots and lots of rashes. We then started to treat the clots and the rashes as if she had vasculitis, and she got better from time to time. The stroke was a set back, a huge heart breaking set back but she recovered, now she is turning 7. She is still ill alot, has sores everywhere and is hurting most of the time.
Her time at home is ok, shes tired alot, sleeps too much and she is taking over 15 medicines, some that seem to help and some that seem to hinder her. Since we had no diagnosis but a best guess, the admission we are in now called for a special Doc to come in and give his next best guess, Behcets.
I fight to grasp it and its meaning for our little angel. I fight to keep her alive, well and at home, in school. I pray to find a treatment regimin that will assist in making her light shine on for years to come.