We began the day with her ophthalmologist, Dr. Onan. I was very nervous about this appointment because it had been a year since we'd been with this specialist and we knew her goal was to try to do some exams that our daughter had not had since she was just a few weeks old. Our daughter is "very two" right now, so I wasn't sure how she'd comply...but she was GREAT! The doctors started out by checking the pressure in her eyes, putting drops in her eyes to dilate them, and then they had her identify pictures of different sizes. Then, after playing in the lobby for about 15 minutes, they gave her a very thorough exam using multiple flashlights and lenses. In the end, we found out that our daughter is depending on both of her eyes equally. She is not dominant with either eye which is a real praise. With the number of days her left eye was swollen closed as an infant, the doctors were afraid her left eye might not be developed properly. For her age, her vision is good. She may need glasses one day, but it won't be due to PHACE Syndrome! We will visit Dr. Onan again in one year.
Then this afternoon, our daughter had an appointment with her dermatologist, Dr. Levy. He is an amazing support and I always look forward to opportunities to hear from him about our daughter's progress. I was anxious to ask him about the possibilities of laser treatments and begin to make a plan regarding some of her blood vessels and remaining hemangioma. He is very pleased with her progress and thinks she looks beautiful. He described her most recent MRI as "unremarkable". We discussed our options regarding laser treatment and will talk about them again when the hemangioma is no longer growing.
We did have a strange "first" today when one of our daughter's hemangioma bled considerably while she was sucking her thumb during a nap. Luckily, we were in the car on our way to see Dr. Levy when this happened, so I was able to ask him about this. We found a couple of places in/on her mouth that could have been the culprit, but Dr. Levy said that he would not define this as "ulceration" since it was the first time we've seen something like this. We will watch for re-occurrences. We will try to wean her off of the Propranolol over the next months and plan to see him again towards the end of the year.Once again I am convinced that it is the specific prayers of our friends over Ella's eye that have contributed to her positive appointments today. We know that God hears the prayers of His people and our daughter is just one example of this!
