What the Henkel, Padawan?

Since the last doctor’s visit, we have known that Adrienne’s eye could be caused by one of two problems: a benign tumor, called hemangioma or a vascular malformation which is basically when blood vessels and arteries have grown together incorrectly. I think it’s more likely that it’s the latter one since it seems to get bigger when she gets angry (which indicates that blood vessels are involved). The only thing that doesn’t point to it being a vascular malformation is that they are usually present at birth. Hers only showed up when she was about 8 weeks old. Although, it could be that it was small enough to go undetected.
I’m comforted by the fact that they are leaning towards a vascular malformation since the things I’m finding about hemangiomas on the internet are pretty scary. I found the following quote in a document that is trying to inform parents how to get insurance coverage for treatment since most companies will not cover it:

“Waner and Suen (1999) further stated, “Only 40% of hemangiomas involute with an acceptable result. Therefore, 60% of all patients with hemangiomas will require some form of corrective surgery” (p. 27). Williams, et al. (2003) also noted that “If these often disfiguring vascular lesions do not involute early, they may have profound psychosocial effects on the child and family” (p. 229).

I’m not saying that it doesn’t happen with vascular malformation cases but, from what I have read, it just seems like the hemangiomas grow quicker and can become a lot larger in size. The worst thing about the chance that it’s actually is a vascular malformation, is that it’s harder to get rid of. They can keep growing for life.

I’m hoping to find out more on at our next appointment on September 5th. They took pictures of her last time we were there, so they should be able to see for themselves how much it has grown and maybe be able to predict how much it will grow in the near future. I don’t want to put her through an operation, but if it’s an option to get rid of it as soon as possible, I will consider it.

I’ve been trying to limit how much research I do on this since I could easily drive myself crazy. But, I can’t just sit here and wait. I need to know what is going on with my little baby girl.

The biopsy went on as planned yesterday but we were told that the results won’t be in until next Friday. I guess all there is to do is wait…and make videos! Today, while we were getting ready to go meet Erik’s parents for fika, Adrienne started to smile at him. I grabbed the camera and captured a couple smiles but also some other fun facial expressions. My personal favourite is the one at the end where she looks bored and ready to move on “anyway!”

You can also see her eye a little better in the video. Some more bruising occurred during the procedure but I think it is from the doctors trying to take a better look at her eye or by holding it open while they worked on it.

I apologize for the sound of my voice. I really need to stay quiet while filming!