You have doubts that you will be good enough, that everything will be alright. You worry about the right kinds of diapers, too much television and are they really getting everything they need.
Your children become your whole life and you hope to do everything you can for them.
We had a beautiful baby girl on July 13, 2009. She was our world! The first year, we watched vigorously as she crawled, got her first tooth, walked, said her first words and more...
But as we got past her first year, she started to develop trouble with her eyes...
She would get styes the size of the tip of my small finger, which have left some scarring on her eyelids. Her eyes would look red and irritated, quite like pink eye, very often. Its hard going into public places and being asked "What's wrong with her...", "Does she have pink eye", "Is she contagious..."
The first one told us there was nothing wrong with her.... (idiot)
The second one told us it was dry eye and she would grow out of it. Our goal was to give her eye drops at night and twice a day...
Now those of you that have children know how hard it is to give medication. So imagine having to pin down your child twice a day to put drops in their eyes...
Her eyes would be good for a couple weeks, she would be able to see and to function like any other normal child. But during the time of her "episodes" it was very difficult. She became sensitive to light, so getting up in the morning took extra long because it hurt her to open her eyes. We keep sunglasses all year round in our vehicles and in the house. She would wear them to school, shopping and around the house. She would be in so much pain that it would hurt to brush her hair no matter how snarl free it was.
My baby girl was in pain and it felt that there was absolutely nothing I could do about it...
We finally found a third specialist, because what we felt we were doing wasn't good enough...the "episodes" continued...
For the next year, the time in between episodes was longer, but every now and then she was still dealing with pain, inflammation and light sensitivity.
Eight weeks ago, we took her back to the ophthalmologist in Albany for a check up. She was going through an "episode" and I wanted to keep on track of her vision. So I drove four hours with my four year old, to find out that her light sensitivity had gotten so bad that we couldn't even make it through the initial exam to check the dilation in her pupils. Immediately they sent us to the cornea specialist across town. The same thing occurred there...
The only way to exam her eyes would be under general anesthesia. Hearing that my baby not only has been in pain, but will now have to go into "surgery" for her eye exam wrenched my stomach.
We would return in 2 weeks after being given a steroid to take away the inflammation for them to examine her eyes. We arrived at the hospital at 6 am, they took us in, explained everything in great detail, and carried her off...
It only took a half hour, but it felt like forever, wondering how she was doing...what would they discover...would we finally get some answers!!
The cornea specialist and the pediatric ophthalmologist came out and I could feel myself starting to shake, and my palms getting sweaty...
We learned in the next 10 minutes that "her oil glands are not producing enough oils to keep her eyes clean and moist, which is causing her eyelids to become inflammed and a great deal of irritation, because she as been through so many episodes of this she has scarring on her corneas." They were hoping that it hadn't effected her vision and that she would only need glasses...that was our hope, just glasses and some medication...
We returned again, in two weeks after the surgery to check her vision. She had been on the steroid for 4 weeks at this point. It was the first time since we can remember that she was actually looking at us, she was lifting her chin up to see around her. She hadn
't worn her sunglasses in 2 weeks. This was such a huge change for us! We just knew that all she would need was glasses!
We met the cornea specialist first....
She would need cornea transplants.....
We then went to the pediatric opthalmologists....
Her vision was 20/100, 20/800....She would need cornea transplants....
How do you tell a child that this is what they need?? How do you explain that in just a couple months she will be going through surgery and wont be able to see for awhile...
How do you tell yourself that everything will be ok...that you did everything that was possible to help her out....
What if you had gone earlier...what if you had given her a different medication...what if...
The past couple weeks since we have been to the doctors this is all I can think about...
Can I take her place...can I take her pain...
