Update- Sorry it took a while!

Hi again. First of all, I'm sorry it took a while for me to write up an update from Lena's last doctor visit. We went to MD Anderson a few weeks ago on a Monday to get her checked for the clotting/fluid that caused the large bump on her head. Let me start by saying that typically our visits to the neurosurgeon are the least stressful of appointments. They usually get us into a room quickly and Dr. DeMonte is fairly punctual. Well, not for this visit. We waited in the waiting area for almost an hour before I finally went and asked to be given an idea of when we'd be called back. They seemed to have forgotten about us and there weren't any other patients waiting. Finally we were called into a room and a nurse we had never met was filling in for our usual nurse. She didn't know Lena's history so it was fristrating trying to ctach her up and fill her in when I knew we'd never see her again.

After another hour, we were told that the doctor was in the operating room. I didn't expect him to leave the OR to see us but I was getting agitated and Lena was getting bored and starting to melt down a bit. He finally called us from the OR. Yep, he just called into the room we'd been sitting in and never actually came to check her out.

So.. what we think we know. The doctor seems to think that the mass was a clotting of old blood, perhaps from the surgery that took place 4 months previously. He again stated that it was highly unusal and asked me to keep an eye on it. Although they had drained a large amount of the fluid the previous Friday, we needed to make sure there wasn't additional clotting and that her body was absorbing what was left.

As of now, there is still some fluid remaining but I don't think it's gotten worse. If this was to happen again, Dr. DeMonte would like to do a procedure where they put contrast (dye) into her brain to determine where the blood is originating from. We both agreed that she's been through enough and that we didn't want another procedure with anethesia right now. So, we're hoping this was a one time deal and that there's no need in the future.

On another note... Lena is really fighting against wearing her glasses anymore. She seems to have accepted that her one eyelid will not open and chooses to let it remained closed. However, at six years old, she doesn't understand the consequences. If she does not use the eye and keep strengthening it, she will lose her vision. It's a constant battle and it makes us feel so guilty. She's been through so much but we aren't willing to back down right now. We do hope that someday there might be a medical option that would help her gain use of her eyelid functions again but that would not do her any good if she has already lost her vision.

Keep her in your thoughts and send her strength.. oh, us too! :)

Love you lots! xoxoxo