Update / Surgery coming up/ Updated helpful blog - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-17-2014, 02:21 PM
momof3inpa2009 momof3inpa2009 is offline
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Location: PA USA
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Default Update / Surgery coming up/ Updated helpful blog

Well just wanted to update; after this 5 year journey our little one is having surgery in less than two weeks. You can read my updated blog here:
http://lexihemangiomapropanolol.blog...o-surgery.html
Please wish us luck!
I am so glad that I have kept track of everything in my blog because it not only helps me to remember things but helps others out there!
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Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #2  
Old 04-19-2014, 12:23 AM
smurph smurph is offline
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Thank you so much for sharing! I too love the fact that I kept a photo journal of my daughter's hemangioma. I feel like it really helped me process things, keep a record of what was going on and it has been helpful to others over the years. I wish you the best of luck on your daughter's surgery. I thought your comments on the propanolol were really interesting and certainly something to take note of and keep an eye on. Keep in touch and let us know how the surgery goes. I hope you feel great relief and peace when it is over!
Shannon
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  #3  
Old 04-19-2014, 01:38 AM
momof3inpa2009 momof3inpa2009 is offline
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Location: PA USA
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Thank you! I remember reading someplace (could have been on here years ago)
Something where someone asked if they felt propranolol was making their babies grouchy. I had noticed that with our Alexis from the start. Thanks so much for your kind words!
__________________
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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  #4  
Old 04-22-2014, 09:02 PM
mshell mshell is offline
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Join Date: Jan 2012
Posts: 1
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Hi, please keep us updated on lexis surgery, your blog has heen a great help to me. Sent you email from blog. Thinking of u...
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  #5  
Old 06-19-2014, 06:11 PM
momof3inpa2009 momof3inpa2009 is offline
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Join Date: Dec 2009
Location: PA USA
Posts: 112
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thank you so much! she had the surgery and all went well!!! :-)
__________________
Deep hemangioma on left eyebrow towards nose
Started propanolol Feb. 11th, 2010
Off of propanolol aprox. June 2011
Takes 3 doses per day at 1.3ml
2nd Weaning of prop. not a success back on it March 22. Only one dose of 1.3ml now- 19 months old Did Timolol gel for awhile, stopped, & back on - 4 years old. Off of Timolol -doesn't seem to be doing anything. Surgery was a success!!! April 2014
http://lexihemangiomapropanolol.blog...roduction.html
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