Tuesday, August 10, 2010

Getting it all out Written July 26 2009

Sometimes you just have to break free from it all....

So everyone whos been asking about Megan's cond I'm just gonna lay it all out for you & as things change I'll update as we go about our lives. It's not that I don't want to update you all personally but to be honest it's hard writing it over & over makes every moment all the more real. Megan has I-Cell Disease aka ML II. Her level is sev to mod there is no cure no treatment not even BMT is avail. The only opt. is to treat the following sx (if they have avail txs): corneal clouding, dental caries, gingival hyperplasia, mild MVR, mod AR, hepatomegaly, cardiomyopathy, joint contractures & restrictions, hernias, sleep apnea, CTS, ACM, vertebral body anomalies, severe kyphoscoliosis, dysostosis multiplex, macro glossia, anemia, gerd, bilat hip dysplasia, knock kneed, coarsening of her facial features. Her prognosis is not good stat. btw 4-6 yrs but no later than the 1st dec. She is not a stat. Moo is a beautiful lil girl who enjoys life & being a lil sis she loves to play & be a goof. We love her so much!

Read more: http://www.myspace.com/imaarmysoldierswife/blog?page=5#ixzz0wGRsEz5h

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