Ashley's Story

She will leave fingerprints all over your heart


Her New Look

I thought I would share with you Ashley Kate's new look(since it doesn't seem to be changing). This picture was taken this afternoon and I think its a pretty good representation of the swelling that remains primarily on the left side of her face. Her right eye opens a little more than the left and she seems to be able to see much better from it than the other. You can see a larger pocket of swelling on the left side of the eye and also on the upper eyelid. Although both cheeks are quite "cheeky" (and always have been since she is on prednisone) the left one is definitely fuller than the right. Its a little hard to see in this picture but under her neck and underneath her chin is a pocket of swelling as well. Some times, usually in the mornings, the swelling is quite severe and she has pockets of fluid across her forehead that you can actually see and feel. By late afternoon they are gone and her left eyes begins to peek out from underneath the eyelid. Our main concern with all of the swelling is her neck. So far it has not affected her breathing and this seems to be the first question all of the doctors ask as they examine her. Ashley remains happy and active. The swelling does not seem to be bothering her except for the left eye. I can tell she is frustrated by not being able to open the left one up each morning and she rubs at it a lot.

When I look at Ash I just see Ash. She's still beautiful. Most days I tell myself that the swelling looks better and isn't that bad. Every now and then I hear the comments whispered by others, or I answer questions of people who wonder why her face is so large, but like I said most days I just keep telling myself that it isn't as bad as it has been. Perhaps were just adjusting to it.

On the days that she wakes and her left eye is visible then I know its going to be a good day. On the days when its not open at all she seems to be grumpy and struggles a little more, but eventually it opens and her attitude changes. I am still hoping the clots disappear and the whole issue goes away, but in comparison to some of the other challenges she has faced this one is actually kind of small. The danger is still there, but at least she is home and she is happy. She has the opportunity to swing in the backyard, to ride her amtryke, to hang out with Blake and Allie, and to be rocked to sleep by her daddy. When you look at it that way it doesn't seem to be such a big deal.

Ash is doing well despite the clot, the swelling, and the new central line. In my book we have lots to be thankful for and to give praise for. Thanks for checking on the pickle today. Hope all is well in your home tonight. Good night and Take care. Trish


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