Update on our Mayo Clinic Visit today: Gabe was born with vascular malformations throughout his body. None were present at birth but developed over time. He first started showing signs at 9 months of age and had his first surgery of many at 3 years of age. Since then, weve been through Childrens Mercy Hospital, KU Med, Boston Childrens Hospital, and now the Mayo Clinic. Just over a month ago, Gabe started showing signs of a newly developed vascular malformation that has needed more immediate attention. Todays visit to Mayo confirmed how very rare a case he presents but also somewhat put a name to his condition, capillary-lymphaticovenous malformation or CLVM, similar to Klippel-Trenaunay syndrome. After seeing cases much more involved than Gabes, were grateful his are minimally noticeable, although they dont yet know what treatment options are available for him. We really appreciate your prayers! This has been an exhausting season for us between ER and doctor visits, CT scans, scopes, coordinating care between doctors and facilities, getting the right medical records to each doctor and specialty, and figuring out where he can receive the best care possible. After talking to several doctors, it has been determined that Boston Childrens Hospitals Vascular Anomalies Center is the best place for him to go. The team of doctors at the VAC will be at an international vascular anomaly conference for the next two weeks, which means his case will not even be reviewed until the middle of April. My hope is that one of these doctors will get to review his case and take it with them to the conference to confer with other top specialists and come back with great options for Gabe. Our prayer requests: 1. Wisdom for the doctors who will be working with Gabe and a sense of urgency to see him. 2. Gods provision for everything involved with the trip-last minute travel expenses, hotel stays, etc. 3. Comfort and healing for Gabe and peace and rest for all of us. 4. Grace offered by Gabes friends, that they wont be too inquisitive about his school absences and whats wrong with him. Its hard to have medical issues in middle school, but especially when its something so rare. Thank you to all of you who have messaged your concern for us. Please forgive me if I havent replied. Its been a pretty overwhelming month for us. Those of you who are my amazing clients, please dont hesitate to call me for appointments! You are part of my prayer request #2. :) I still need to work and be busy. Sitting idle too long does me no good at all.
Posted on: Sat, 29 Mar 2014 03:28:50 +0000
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