Thursday, January 5, 2012

Sounding Board

When I started writing about Catherine's hemangioma, it was because I had been researching like a mad woman and, among all of the disturbingly graphic information available online, had found some relief from reading the blogs of other mothers going through the same thing. I began sharing each doctor's appointment, blood pressure reading, and treatment change both as an outlet for myself and in hopes that it would one day offer some information and support to another mother.

Today, I was fortunate to meet (via facebook) a friend of a friend who is just beginning this journey with her two month old daughter. Just telling her about our journey made me realize just how far we've come. I had forgotten how utterly scary it was and how completely helpless I felt at the very beginning. I had forgotten the deep red color of the bulging bump on my baby's forehead. I had forgotten the rage I felt the first time a complete stranger had the audacity to ask me what was wrong with my baby. 

I had forgotten it all because while it has faded dramatically, it has also just become a part of my daughter. Some days, I forget it is there until I sweep her hair from her eyes to reveal the pink mark beneath. It is amazing how far we have come since we started treatment back in May. She is no longer on the clobetasol steroid cream at night, although we are still administering propranalol blood pressure medication every eight hours. But, Dr. Theos says that we will start weaning her off of that shortly after her first birthday since that is when the hemangioma will begin to shrink on its own without medical help. If it has not faded by the time she is four, we will look into laser treatment, but it should mostly go away on its own. She may be left with a slight scar without laser treatment, but it will be minimal and I'm sure we can find a cute hairstyle to hide it if need be (once she outgrows the adorable flower headbands that have become her signature look).

So as I look at my daughter and compare to photos from the beginning, I am flooded with the emotions I had then and relieved at what I see before me. We've come a long way and I can only hope the journey for my new friend is as positive as ours has been.

Day 1 of treatment (5-11-11)

After over 7 months of treatment

1 comment:

  1. amazing!! she is just gorgeous....but she has been since day 1!!!!