As of February 11th Sarah is completely off of the steroids that she began at two and a half weeks old. Sarah's doctors have decided now that she is getting laser treatment once a month that the steroid use is no longer a necessity and the side effects are not worth keeping her on them.
After two weeks of being off the steroids we noticed the hemangiomas had started growing on the inside of her lip. We immediately took her to the hematologist Dr. Mogul. After talking with Dr. Mogul we decided it was time for another MRI because of the new growth on the lip we were concerned about the growth on the inside near her airway and behind her eye revealed on previous MRIs.
After getting the results of the MRI the good news is that there is no new growth anywhere but her mouth and since there is no obstruction with her eating or breathing chemotherapy is not required at this time.
Sarah is very happy to be off of the steroids,she is playing more during the day and interacting with us more. Plus she is now sleeping through the night. She has also been working on her first tooth, expected to arrive any day.