Brooklyn's sight has always been a big question mark, well along with a lot of other things about her. She has all the correct parts of her eyes to be able to see, the question then lies in the connection between the eyes and the brain. She rarely focuses on anything and generally her eyes are just rolling around especially since she started having seizures. In fact she rarely even opens her eyes. Many people including her vision therapist (yep they have those), her eye doctor and me have different theories as to why she keeps her eyes shut most of the time. I figured it was a combination of seizures that make her tired and medication that makes her tired. Her vision therapist's theory is that the world is really overwhelming for her and her coping mechanism is to shut things out that she doesn't quite understand by closing her eyes and basically checking out. I have noticed that she seems more alert when things are quiet and she feels safe, but honestly keeping things quiet and stable at my house is next to impossible, so I do my best, but seriously I have other kids.
Today Brooklyn had an appointment with her ophthalmologist and he came up with an entirely new theory. He asked how her sight was developing and I said, "Well lets be honest, its not as far as I can tell." Brooklyn doesn't focus, doesn't track, and doesn't even respond really to bright light shining in her eyes. However, I do truly believe that she can see and I believe deep down that there are brief moments where she connects with what she is seeing (gotta stay optimistic). I mentioned to him that she doesn't open her eyes all that often and even when she does, she doesn't open them very wide. At his office she seemed to be awake and wiggling around but we really didn't get her to open her eyes on her own. His theory is that she may benefit from an eye lift. If we can help her eyes to easily open wider, then it may make it easier for her to focus on some things. He set me up with an ocular-plastic surgeon to see what their opinion is on her eye lids. He said that most likely her eyesight is going to be directly related to her development, but he wants to make seeing as easy as possible for her.
So we get to see yet another specialist in a few weeks. The thought of surgery always makes me nervous, but I am willing to do what I can to help make her life a little easier. So we are going Hollywood and getting our little girl an eye lift, I mean everybody is doing it, right!!!
So I decided to start a blog. Really this is more for me than for anyone else. A place to get out my thoughts, frustrations, things that work and things that don't. I want to have information written down so that if anyone especially maybe one of my own kids has to go through a similar situation, they have an in the moment account of how I learned to live life differently after Brooklyn was born.
I have wanted to do this for a long time, but was a little overwhelmed and didn't know where to start. So my plan is get down what we have been through and learned about Brooklyn as well as what we are currently going through and trying. There really isn't going to be any particular order and while I want to include the beginning of her story, it will be mixed in with what we are working on now. I'm also not putting pressure on myself with this thing, its supposed to be mostly for posterity and help keep the people that love us and Brooklyn updated on how she is doing. So no promises as far as how often I will post (that is mostly for me). But I truly want this to be a real account of our lives. It won't be all warm fuzzy, but it also won't be completely depressing. Just a honest and not always eloquent description of what is going through my mind and what is going on with Brooklyn.
Its hard to believe that it has been almost 10 months since my life turned in a direction that I never thought it would and never even considered. When I was pregnant with Brooklyn, I used to say well my life is already crazy with 3 kids so why not throw one more in the mix. Yeah, I had no idea what I was talking about.
I think about that first week after she was born and how many unknowns were thrown at us. Brandon would quickly look up terms that the doctors used on his phone and we would try to speculate and figure out what we were up against with this sweet little girl that we loved so much. I would come home after talking to doctors all day and completely lose it, usually in the shower. I just didn't think that I had the strength to deal with it all. Looking back on all that now, its amazing to think about everything that I have been through since and about all the things that I have learned and done that I never thought that I was capable of. I truly believe that the Lord gives us strength when we are so whipped we can't stand, it not always in the way we expect or maybe even want...but it is there.
