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“He is like a tree, planted by streams of water, which yields its fruit in season, and whose leaf does not wither.” --Psalms 1:3

Location: BlogsThe cure4treebeard Blog    
Posted by: Daddy 5/23/2008 11:41 AM

 

Short update:  Tuesday's surgery went well and JT now has a "Mickey button" instead of a G-tube.  It's much less obtrusive and he seems to like it.  It's a little loose, so if it doesn't tighten up as it heals they may replace it with the next size smaller next week.  His infusions also went well and everything is still a go to start photopheresis next Wednesday.  We leave this afternoon for South Carolina - the boys are really stoked and we look forward to seeing their faces when they first see the beach.  JT has a wardrobe of high-tech sun protection gear he's anxious to try out.  I'm aware that this is the furthest away we've been since he was born:  the nearest major hospital to where we'll be staying is 2 1/2 hours away.  We have a letter of introduction but please pray that we won't have to use it.  It would be great to experience a few days of relative relaxation given the intense treatment schedule that begins next Wednesday.  Please keep JT in your prayers and enjoy your Memorial Day! 

Copyright ©2008 Brian Brown
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Raise money for the National Foundation for Ectodermal Dysplasias simply by clicking your mouseGoodSearch.com (powered by yahoo.com) is donating money to charities for use of their search engine.  To use it, install the GoodSearch toolbar to the top of your browser screen and then type in the charity (National Foundation for Ectodermal Dysplasias) and then search as you would on Google.com or Yahoo.com.  The NFED gets a monetary donation for every search!  The more folks that know about this, the greater the donation to NFED, and hence the more money there is to fund research on Jacob's condition and others like his.  Thank you!

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