Hello, my name is Henlie Rilynn. I was born with a "Strawberry" Hemangioma on my left shoulder. It started out as a small, flat spot on my shoulder, but continued growing rapidly as time went on. It grew taller and wider. At a little less than 2 months of age, it became ulcerated. For no apparent reason, the dermatologist just said it happens in a percentage of the hemangiomas. But, once it became Ulcerated, it became extremely painful for me! I couldn't wear clothes on that shoulder, couldn't have my family hold me certain ways bc I screamed at the slightest touch. I haven't been allowed to do any tummy time or arm exercises to make my muscles stronger to get me to where I should be. I was prescribed all kinds of medications to try and help it, but my body was rejecting all of them. Leaving me in complete pain! I would scream for hours at a time day in and day out with no relief. I had a laser procedure done, which didn't help. Was taken off of my medication due to struggling to breath. Recently I was admitted into the hospital on Thursday, February 8th because my Ulcerated Hemangioma split open. It had a slight infection and was also not healing, but rather continuing to grow. Making it that much more painful for me. I currently am at the hospital still and will be for at least another week. My mommy and daddy have been talking to dermatology, plastic surgeons, pediatricians, wound care, physical therapy, all sorts of doctors! And they've come to the final decision that the best thing for me would be to have it removed because medications are not working and the amount of pain I am in is not something they want to have to continue putting me through. The surgery procedure I'm going to have included total removal of the hemangioma. They will put a tool called a "Wound Vac" into the large hole that will be left in my shoulder bc it will be such a large hole that it will not be able to be closed. I will then have to do follow-ups at the plastic surgeons office every other day. I will have to get an IV put in every appointment where I will get sedated so they can change out my wound vac because my little body cannot handle the amount of pain that will entail. This process could last about 6 weeks, possibly longer. And then, depending on if the hole closes or not, I may need a second procedure where they do a skin graph to close the hole off, which is an
other month or so of healing, appointments, etc. I am asking for any kind of help you can to help me be able to get these procedures, medical equipment and after care I need. Anything helps! I appreciate all the love and support, and constant prayers! Please keep me in them. My surgery is Friday.