Saturday, September 17, 2011

Corneal abrasion

Last week was horrible. Anna got corneal abrasion on her right eye for the first time. My poor baby was in severe pain. Wednesday morning she was not opening her eyes even after we woke up. She didn't even open it to wave TATA to us. Just said bye bye. We thought she may be tired and want to sleep more, but I had this strong doubt that she got some problem with her eyes. This is a thing that I was always afraid of. Friday we took her to pediatrician and then to eye doctor. Eye doctor was not experienced with EB but he was very gentle with Anna. When he tried to open her eyes to examine it, I was begging him to be very gentle with her. But he was very calm and did a good job. He put dye on her eyes to examine it and said that there is a scratch on her cornea, but it was already started to heal. He gave some medicine to put on her eye and asked to come back on Monday. He said by that time she will be fine. Last Saturday and Sunday was the worst days ever. She was not opening her eyes at all, whenever she open, tears will start to flow. And was very sensitive to light. We switched off all light, put curtain on all windows. The worst part is she was not eating or drinking anything. She won't sit down or lay down. I was carrying her all day long by rocking her. Monday also she was not opening eyes well. Doc asked to continue medicine until Wednesday and we need to go back on check up. By God's grace she is doing okey now. Wish, I could sit near her all night to prevent her from rubbing her eyes again. I can't imagine how much pain my baby is going through.

Whenever it hurts somewhere or itches, she will ask us to apply Aquaphore. Poor baby, she is thinking like all her pain and boo boos will go away with Aquaphore. If we say that we have some pain or some one coughs she will offer Aquaphore. She is a such a caring and loving baby. Wish she don't have to face such horrible and painful things any more. God please keep her safe this night and every night to come. I am so thankful for my baby. She is truly a blessing. I love you my Annu.

Friday, September 9, 2011

Telling others about EB!!

This is always a difficult job to explain some one about what Anna has. When I say that she has skin disease the first response comes is, oh it is just skin, it will go away. Okey. I don't bother to explain it too. I don't want anyone to know that my baby has this devastating disease. I don't want anyone know that we are struggling with this disease. I dreamed about having a health baby, showing my baby to everyone, taking her to parties, going trips, going to church together etc etc. Lot of dreams. But this disease shattered all my dreams. I can't even share a good photo of my baby with any one. Yes I have a baby with disease I should accept it. But I can't, I am living in a hope that soon she will get cured, her disease will go away. May be by miracle or a cure, then I can show her to the world. How soon it will be I don't know, how long I can keep it from others I don't know. I still can't agree that she has some disease that is not curable. I belive truly that there will be a cure soon..

Only very few best friends and our closest family know that she has this disease, others know that she has a skin disease. But they think like it is a temporary thing and will go away. I don't have the courage to tell anyone about this. The most frightening thing is the images they get when they search in Internet. At my work, none of the poeple no that she has EB. Well, no one asks me about the disease's name. No one wants to know more about it, then why I should bother about explaining what she has. Even if I explain there is no use. No one understand anything about how we are struggling daily, mentally and physically. When everyone ask how is Anna, I will say ' she is okey' I will never say 'she is good'. Because she is not good. She is always in pain. She always gets one problem after another. If she is happy one day, the next day she will get some problem.

Another reason I don't volunteer to tell is that I don't think I can work comfortably with them after that. Now that no one know about this, I can forget about EB and work peacefully at work and come back home and worry. Well, not peacefully, at work also, if I am not busy will be always thinking like, does Anna eat anything, is she breathing well, when is her next dr appts, what phone calls need to make for her insurance, supplies etc,

I know one day I need to tell this to everyone, one day everyone will know that she has EB. But could I be able to tell that Anna had EB and she is cured and is doing fine now??? let time tell.

But nowadays I have this strong feeling that I should do something to let everyone know that there is a disease like this. There are babies born in pain and is living in pain. I think I am slowly getting strength to tell world that Anna is battling with EB. At least this blog is a starting point.