News: May 2008 Archives
Hello. Hard to believe it's been about two months since our last update,
and that Arielle is three months now. Since most people want photos,
here's one of the first capturing her smile (hello adorable!!!):
We've received mixed results since our last update, but good definitely outweighs bad. We'll start with the tough stuff. The most recent MRI revealed another portion of Arielle's brain didn't form properly: the right cerebellum, which is responsible for things like controlling movement and processing language. This now means two different parts of her brain didn't form properly because of PHACE Syndrome, the rare disorder linking a large, infantile hemangioma (abnormal mass of capillaries - usually of the face), and birth defects of the brain, heart, arteries, eyes and/or skin.
As was the case with the other brain defect (complete agenesis of the corpus callosum), it will likely be quite some time before we understand what this means for Arielle, her growth, development and future. Translation: please continue to keep her in your thoughts and prayers!
In the short-term, we've been attempting to stop the growth of the hemangioma on her face. The picture above does the best job of explaining what a hemangioma looks like. When Arielle was born, there were only faint pink marks in areas that quickly exploded into the large, red masses that have now taken over the better part of a quadrant of her sweet little face. In an attempt to prevent any long-lasting facial deformities and worsening impact on her right eye, Arielle went on steroids about two months ago. Thus far, the medicine seems to have helped slow the progress, but has yet to fully put the brakes on it.
One of the best pieces of news is that the echocardiogram determined Arielle's heart is structurally and functionally normal. Yippeee! And, another test revealed the bulk of her right optic nerve formed, meaning there may be hope for some sight in the eye that was previously diagnosed with permanent blindness.
As many tests as she has endured, many more are in store for her future, and we're beginning to understand regular tests and monitoring are going to be a part of our family's life. Arielle still needs an MRA (magnetic resonance angiography), a special type of MRI test designed to evaluate arteries, veins, and the flowing blood within them. Another MRI focusing on the eye area should tell us more about what's possible in terms of restoring any vision to her right eye. Soon, we travel back to Texas Children's Medical Center in Houston to visit one of the leading doctors specializing in PHACE Syndrome, and are eager to receive any new insight. We also plan on attending the inaugural PHACE conference for the condition in November.
We're extremely pleased to report that thus far, Arielle has met all of the developmental milestones on time, and even early in some cases. She regularly coos and smiles, and has taken a particular liking to: FOOD, music, FOOD, being outside, FOOD, bright colored toys, FOOD, and Big Bird. Did we mention the girl likes to eat?
Thank you for caring about our family!
- Mary Alice, Travis and Baby Arielle
We've received mixed results since our last update, but good definitely outweighs bad. We'll start with the tough stuff. The most recent MRI revealed another portion of Arielle's brain didn't form properly: the right cerebellum, which is responsible for things like controlling movement and processing language. This now means two different parts of her brain didn't form properly because of PHACE Syndrome, the rare disorder linking a large, infantile hemangioma (abnormal mass of capillaries - usually of the face), and birth defects of the brain, heart, arteries, eyes and/or skin.
As was the case with the other brain defect (complete agenesis of the corpus callosum), it will likely be quite some time before we understand what this means for Arielle, her growth, development and future. Translation: please continue to keep her in your thoughts and prayers!
In the short-term, we've been attempting to stop the growth of the hemangioma on her face. The picture above does the best job of explaining what a hemangioma looks like. When Arielle was born, there were only faint pink marks in areas that quickly exploded into the large, red masses that have now taken over the better part of a quadrant of her sweet little face. In an attempt to prevent any long-lasting facial deformities and worsening impact on her right eye, Arielle went on steroids about two months ago. Thus far, the medicine seems to have helped slow the progress, but has yet to fully put the brakes on it.
One of the best pieces of news is that the echocardiogram determined Arielle's heart is structurally and functionally normal. Yippeee! And, another test revealed the bulk of her right optic nerve formed, meaning there may be hope for some sight in the eye that was previously diagnosed with permanent blindness.
As many tests as she has endured, many more are in store for her future, and we're beginning to understand regular tests and monitoring are going to be a part of our family's life. Arielle still needs an MRA (magnetic resonance angiography), a special type of MRI test designed to evaluate arteries, veins, and the flowing blood within them. Another MRI focusing on the eye area should tell us more about what's possible in terms of restoring any vision to her right eye. Soon, we travel back to Texas Children's Medical Center in Houston to visit one of the leading doctors specializing in PHACE Syndrome, and are eager to receive any new insight. We also plan on attending the inaugural PHACE conference for the condition in November.
We're extremely pleased to report that thus far, Arielle has met all of the developmental milestones on time, and even early in some cases. She regularly coos and smiles, and has taken a particular liking to: FOOD, music, FOOD, being outside, FOOD, bright colored toys, FOOD, and Big Bird. Did we mention the girl likes to eat?
Thank you for caring about our family!
- Mary Alice, Travis and Baby Arielle
I'm obviously going to have to post here more regularly than just on the major holidays.
This will be kind of short as I don't have Mary Alice's wordsmithing skills. Hopefully I can free time for her to write a more detailed update.
At the moment, Arielle is receiving prednisolone (an oral steroid) to arrest the growth of her hemangioma. It does appear to be helping, although we did back off the dosage a little too quickly two weeks ago. We've since increased it to the maintenance level. We go to Houston later this month to visit with Dr. Denise Metry, who specializes in PHACE syndrome. We're looking forward to what she can tell us about Arielle's case.
Thanks for checking in on us - it's hard to believe tomorrow is Arielle's three month birthday!
This will be kind of short as I don't have Mary Alice's wordsmithing skills. Hopefully I can free time for her to write a more detailed update.
At the moment, Arielle is receiving prednisolone (an oral steroid) to arrest the growth of her hemangioma. It does appear to be helping, although we did back off the dosage a little too quickly two weeks ago. We've since increased it to the maintenance level. We go to Houston later this month to visit with Dr. Denise Metry, who specializes in PHACE syndrome. We're looking forward to what she can tell us about Arielle's case.
Thanks for checking in on us - it's hard to believe tomorrow is Arielle's three month birthday!
