June 22, 2008
Arielle has been to Houston to visit the PHACE specialists and had an MRI and MRA exam since our last update.
Dr. Denise Metry in Houston shared her experiences with PHACE patients and helped us understand what might lay ahead for Arielle's future. Many kids struggle with migraines on the hemangioma side of the head, for example. While many children often experience developmental delays, often they are eventually able to "catch up" with their peers. They don't know why, but it was encouraging to hear. She said generally expect a very rough first year, but life often gets better after that. She also said a hemangioma of Arielle's size and severity usually proliferates for a year, perhaps more, before involution (or regression) begins.
All doctors and specialists say the longer Arielle stays on course developmentally, the better. And so far, weíve been blessed that Arielle has stayed on proper course. She receives special attention from two Early Childhood Intervention experts, and we're diligent in our efforts to listen to their advice on proper stimulation - physical and verbal - to give Arielle at specific ages. And these people really know exactly what infants should be doing and when.
The MRI and MRA revealed some fascinating findings. The bad new is that Arielleís hemangioma has grown profusely since her previous round of tests. And itís not isolated above the surface any longer. Itís even bigger underneath her skin, in places like her neck, etc. It behaves like wildfire, and will destroy anything in its path. Other PHACE kids lose their hearing, for example. Itís already compromised an eye, so weíre anxious to get its growth under control.
The same day the results came in, her pediatric dermatologist decided to double her steroid dose in an attempt to put the brakes on the hemangioma once and for all. This has made Arielle an extremely hungry child. The medicine is also an immune suppressant, so to greatest extent possible, we're "germa-phobes," in an attempt to keep her healthy.
The rest of the results were better than we could have hoped. Her entire optic nerve, while very small, is fully formed. We'll go back to the pediatric ophthalmologist to learn if that means Arielle is eligible for a future cornea transplant, which may help her see out of her now blind right eye. Arielle's right carotid artery is extremely small. Thankfully, the left side is picking up the slack, meaning there is proper blood and oxygen serving her entire brain. That means for the moment, she doesn't appear to be at any higher risk for seizures, strokes, aneurysms, etc. We also take it as an indication Arielle's brain has the capacity to adapt to its unique architecture. Talk about doing a happy dance!!!
On the cuteness scale, we'll come right out and say it: Arielle's smile propels her into the gifted category. And that's not just coming from her extremely biased set of parents, but quite a few more independent minded people that see her or her pictures. When she's not hungry, she really is as happy as the image below projects. Such a joy and blessing in our lives, which we now cannot imagine without her.
Please continue to keep our little one in your thoughts and prayers, as we have no doubt they've made a substantial difference in our lives.
Thanks, Mary Alice, Travis and Baby Arielle
Prior entries coming soon