Mercy has a medical condition called PHACE Syndrome. For her, this is manifested in a very large facial hemangioma which extended into her ear, throat, sinuses, eye socket, and brain.
For the first two years of her life, the hemangioma was barely under control. It grew practically before our very eyes. She was given an unsedated laser surgery when 10 weeks old, resulting in laser burns all over the side of her face. These ulcerated, sending her to the hospital for IV antibiotics. When the infection and scabs healed, she was left with a lot of scarring which will be removed with plastic surgery this summer.
Two years ago Mercy was a frightened little girl... If she saw someone in scrubs or white coats she would start crying. Merely entering the elevator of the hospital would cause great fear.
We started going to Cincinnati Children's Hospital just after she turned a year old. She is no longer afraid of everything. This is mostly due to the GREAT staff in the Hemangioma and Vascular Anomalies Clinic. Mercy says Nurse Carol is her best friend.
Which brings me to the point of my whole post. Last year we fought with insurance to approve the funding for an experimental use of Propranalol in reducing hemangiomas. After going all the way to the president of the company, she started it on March 4, 2009. Here is what Mercy looked like March 3, 2009:
What you don't see, is the fact that she was SO small... below the 3rd percentile on the growth chart.
What you also cannot see is the face that she had so little energy. Her heart had to work so hard just to get the blood supply for the hemangioma that there was nothing left to give her energy.
And HERE is what she looked like this morning... a wonderful sunny little girl who has more than caught up both in size, development, and energy.
She has inspired me to overcome all hurdles to get what is necessary for my children. To be persistent and not give up. To realize that it is a fortunate person indeed who wears ugliness merely on the outside, but is beautiful on the inside. Most of us hide our ugliness deeply inside and never let it be seen, yet it eats away as dearly as Mercy scarring.
Mercy's hemangioma has taught me the value of prayer. Many, many people pray for her every day. Literally around the world there are people praying for Mercy's healing. The phrase, "I'll pray for you," may be the most powerful phrase in the English language.
So here we are. One year closer to the end of Mercy's hemangioma. I will not miss it. But I have learned so much. I have made so many friends I would not have had.
And most blessed of all... I have the treasure of being Mercy's Mom. And love it every day.
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I must stop now, but if you want to see more photos and read more about our journey, you can go here . Mercy will be having plastic surgery this summer to take away the scarring... feel free to subscribe to the blog if you are interested in hearing how it turns out!
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