October 15, 2008
Hello to all of Arielle's many friends and fans! Today, she is eight months old. As always, much has happened since our last update.
The most promising news is how well Arielle continues to grow and progress. At her last neurology appointment (when she was just shy of 7 months), the doctor ask if Arielle was turning over yet. Not only had Arielle mastered that, she had already started crawling. He was so impressed with how well she's meeting all her milestones, he said he didn't feel the need to see her again for six months! Six months without a neurology appointment - yippee!
Arielle also became the 44th person in the world added to the international PHACE registry. The total count now stands at 48 people, which is an indication of how rare this syndrome is.
The biggest thing that has changed in the past few months is the hemangioma on Arielle's head and face. An article in New England Journal of Medicine reported results of a new study on the use of propranolol to treat severe hemangiomas. In another patient with both a hemangioma and a heart condition, doctors noticed the child's hemangioma greatly improved just as the use of a cardiac medication called propranolol began being used. They study found in most cases, propranolol helped other children's hemangiomas as well. And, we're not talking a little help here - we're talking major, major improvement.
I instantly brought the report to the attention of Arielle's pediatric dermatologist. After doing his own research, he was willing to see if propranolol could help Arielle also.
You all may recall the hemangioma was the greatest concern at the time of our last update. We think these pictures speak thousands of words for themselves in terms of the results. Truly miraculous!
We are now in the process of stepping Arielle down off the high dose of steroids she's been on for nearly seven months now - much, much longer than we'd ever anticipated. We're grateful the unpleasant side effects have started easing as her dosage is lowered, and are eager to close the steroid chapter once and for all
We can't thank everyone enough for your thoughts and prayers. We'd be remiss if we didn't shout out a huge PTL (that's Praise the Lord for non-texters). The article on propranolol was found after a number of prayers and masses were said in Arielle's honor. Something moved my father to use a Google feature (news.google.com) he hadn't used before to see what might up come on infantile hemangiomas. Some people may call it all coincidental. That might be, but we continue to feel an amazing higher power involved with situation after situation as it pertains to Arielle's health and amazing progress.
We know many hurdles likely still lie before our precious baby. We thank you all for continuing to care about her progress and well being, and we'll continue to keep you updated.
Mary Alice, Travis and Baby Arielle