The dermatologist officially gave our daughter a diagnosis of PHACE Syndrome today. It sounds funny, but we are encouraged to have a label to give the many health complications we've seen in our daughter. We will be adding her name to the official PHACE registry with Texas Children's Hospital which will keep us unformed of the latest research and current studies regarding this extremely uncommon occurrence.
The other piece of good news is that the CT angiogram that we had on Friday has come back. The neurologist feels that he was able to gather all the data he needs which means that she won't need the traditional angiogram (which involves a catheter and complete sedation) at this time. The CT angiogram shows that where a typical carotid artery makes a "C" type curve, our daughter's does two "loopy-loops". We're not sure why, but everything looks structurally sound, so he's not recommending any type of procedure or further testing at this time. He still wants to consult with other colleagues, but believes we'll just follow-up on the artery in 6-12 months.
Thank you for your prayers for our family! We appreciate the meals you've provided, emails you've sent and gift cards you've given. We are truly thankful for your friendships and for how you've shown love to our family!!!
There will continue to be doctor's appointments, medications and minor procedures in the weeks to come, bur for now, our daughter's prognosis is very positive!
:)
The other piece of good news is that the CT angiogram that we had on Friday has come back. The neurologist feels that he was able to gather all the data he needs which means that she won't need the traditional angiogram (which involves a catheter and complete sedation) at this time. The CT angiogram shows that where a typical carotid artery makes a "C" type curve, our daughter's does two "loopy-loops". We're not sure why, but everything looks structurally sound, so he's not recommending any type of procedure or further testing at this time. He still wants to consult with other colleagues, but believes we'll just follow-up on the artery in 6-12 months.
Thank you for your prayers for our family! We appreciate the meals you've provided, emails you've sent and gift cards you've given. We are truly thankful for your friendships and for how you've shown love to our family!!!
There will continue to be doctor's appointments, medications and minor procedures in the weeks to come, bur for now, our daughter's prognosis is very positive!
:)
Thanks for the update and beautiful photos of precious Ella. I will keep your family in my prayers. Ella has blessed your lives and she has an amazing family to support her. I miss seeing you at work, but the work you are doing at home is MOST important! :-) Ashley
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