Anna is not feeling well for two months now. Issues after issues.. she was doing fine and our life was "normal" despite her condition. Just that we had to treat her skin and wounds. She got more break down on her face and bottom also. Now it is more than skin, she is getting recurrent corneal abrasions. I am afraid how it is going to affect her. If one week she is fine, the next week she will get it again. And we guess it is because she rubs her eyes at night. If she get one, she won't open her eyes for three to four days. And more painful thing is she won't eat anything. Her weight gain is already very poor.
All her doctors are pushing for g-tube. We are refusing it just because we don't want to put her through surgery and then knowingly another sore on her body. And I am sure that she will pull on that tube and cause more problems. Can u imagine she is 19 months and just weigh 18.5 lbs. She is out of her growth chart. and another fact is from last December she weighed only 2 pounds.. yaa.. that is true.. just two pounds. This last week she hit to 19 lbs and now dropped to 18.5 pounds.
She got corneal abrasion on Monday. And not eating much from that day. So sure that her weight must be dropped below 18. Now again doctors are going to talk about g-tube..She hasn't opened her eyes today morning.
What a horrible disease is this.. Not a single peaseful day for two months now. Daily some new problems. My poor baby is going through tremendous pain. Can I blame her for being angry or cry to take her up to rock her several times during night.. Now every day is a struggle. Don't know what will happen tomorrow. Life is now unpredictable. Life is becoming more and more difficult. If it is just skin that this disease is affecting, I would be happier. Now it is every where, her breathing, her eyes, her growth..... This is doing more damage to her body daily. Just imagin pain from her finger tips to her eyes to her throat to her entire body. how can this be? Why my baby has to suffer like this?
When will be an end for her suffering? I still have a little hope left for my baby to have a normal life. I am afraid to think about future. I am only thinking about a brightful future. One day my baby can wear beautiful dresses like other kids without worrying about seams or buttons or elastic, one day she will get many friends and play with them without worrying about hurting, one day I can talk to others about her without holding a tear that starts to roll from my eyes or hiding the pain I feel in my heart..one day I can take her to everywhere I go, one day I can pick her up how others pick up their kids...When will this be.................
If some one reads this please say a prayer for my baby...thanks