Wednesday, October 20, 2010


When I was in Elementary School sometimes the kids would say "Don't touch her or him they have Herpes" I never really gave it much thought back then of what herpes was, all I know is that it would make the kids cry the ones that were getting the finger pointed at them being accused of having herpes. Everyone would say oooohhh, yucky and grouse!!! I always thought it was mean when kids would say that about the other kids and most of the time it got me into a fight with the mean kids. For those of you that know me that was a common event for me. Little did I know just how brutal herpes could be. Obviously with her lack of Immune system she has had a great challenge combating this virus it has continued to spread and become more violent. The herpes as you can see are very prominent on her lips but, that is just what the eye can see. Her entire mouth was covered with one big herpes cold sore. The herpes had become so infectious that it was covering her teeth, the gums of her mouth had swollen over her teeth and her teeth could not be seen. But, that was not it the herpes continued down her throat through her digestive tract all the way to her rectum and vaginal area. Obviously the pain was very high she stopped eating and even drinking. For a DI patient not to drink causes problems so the constant IV's and feeding tube was a must. When she would go to the bathroom #1 or #2 her body would shake because of the pain. In the beginning she would scream and cry. She would try to hide it from us that she had gone to the bathroom in her diaper because she did not want to have her diaper changed, having her diaper changed was another painful task because of the wiping. So we started spraying her off with the shower hose then allowed her to soak in her bath tub. She would sit in the bath tub for hours and hours. We would have to change the water multiple times to keep it warm for her. We ended up having to put socks on her hands because she would not stop picking at them. The pictures of her on the left in the bath tub was not when she had the herpes. I did not take any pictures of her when she was in the bathtub with herpes. So I put these up instead to show how cute she is in her tub playing with her (buddies) that is what she calls those little toys, they would come with some of her meals. She would sit in that tub for hours. We think because the warm water felt good on her bum and vaginal area. When I would hold her while she was asleep I would put my arm under her head and she would snuggle into my chest. She accustomed her body to not swallow her saliva because of the pain of the contraction in her throat. Well one morning when she woke up I was covered in blood because of the sores on her lips and she was constantly bleeding from the sores in her mouth. It had looked like I was shot by a gun in my chest. When she saw all of the blood on my chest she became very concerned for me and started hugging me trying to console me through my pain well the pain she thought I was experiencing. That is very common of Ari to be so empathetic to others and their comfort or discomfort. When our other kids Kaley, Taylor and Laney went into have their blood drawn to see who would match for the bone marrow transplant, Ari did not want to watch and she was upset that they had to be poked, after-wards all the kids had bandages on them to stop the bleeding. Ari was so upset and she was consoling each one of them giving them hugs and patting their backs. The expressions on her face portrayed pure love and empathy.

1 comment:

  1. There is a special place in heaven for children like yours. You guys are in our prayers.

    DJ and Elise