It has been a pretty hectic month here. 

This weekend, we confirmed that Grace, like her Daddy, has Marfan Syndrome, a genetic connective tissue disorder.  We visited John Hopkins Hospital and met with the world's best Marfan Syndrome doctor.   She has a mild case (if that's possible) of the disorder but we are monitoring closely to make sure it stays that way.

Its hard to type this out and talk about it every time the phone rings.  So, I apologize for the repeativeness if you have already read the following (I am copying it from an email sent to our family this weekend). 

 I realize that the news of Grace's Marfan Syndrome diagnosis is very
emotional for everyone.  It is for us as well (though I think that's
 obvious).  I also realize that it may be a little easier for us to deal
 with because Bill and I have done so much research so that we can
 understand the syndrome.  For me, I need that so that I can feel better
 about both Bill and Grace's health, now and in the future.

 Marfan Syndrome is a fairly rare syndrome, though we read recently that
 it is one of the most common inherited connective tissue disorders.
 There is so much more information available now than there was when Bill  was diagnosed in the mid/late 1970s.

 Here are some links to help you understand the syndrome.  If you have
 any questions about it, please ask.  We want you to understand the
 syndrome as much as it is comfortable for you.  As you read some of the
 reports and findings about Marfan Syndrome, please remember that Grace (and Bill) are mild cases of Marfan; many times the reports and
 information talk about severe Marfan Syndrome to illustrate what can
 happen within the syndrome.  Marfan's tends to mimick itself within a
 family; Grace's case will be similiar to Bills---not severe at all.
 See----silver lining can be found if you just look for it! :)

 Again, thank you for your support---just knowing that you all love Grace
 is enough for us.  We love you too!

 National Marfan Foundation: www.marfan.org

 Characteristics:
 http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4

 Treatment Options:
 http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=7

 Pediatric Marfan Information:
 http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=5&menu_item_id=42

Ocular Concerns:
 http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=10&menu_item_id=42    Grace's lenses are subluxated.  2 eye doctors in Northern Virginia want to remove them and put her in glasses.
Dr. Dietz has strongly discouraged this procedure at this point.  We
 will be visiting the eye clinic at John Hopkins to get Grace glasses
 that will correct her vision without removing the lenses.  Surgery will
always be the last resort.  Later in her life (late teens), lens replacement could be possible but that is far down the road.

 Cardiac Concerns:
 http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=22

Grace has a slightly enlarged aorta and will be taking Atenolol to
stop/stall the growth of the aorta.  In 3 months, we will visit the
doctor again to make sure she has the right dosage.

Grace's doctor at John Hopkins is Dr, Hal Dietz.  He is the Chair of the
Professional Advisory Board for the National Marfan Foundation and is a
world reowned expert on Marfan Syndrome. We want the best doctor in the world for Grace and we got him!  Dr Dietz is also getting a genetic
profile from Bill so that he can isolate the actual gene mutation.  Here
is his Hopkins profile:
http://www.hopkinsmedicine.org/geneticmedicine/people/faculty/dietz.html.   The next link is a press release that talks about both Dr. Dietz and Dr Victor McKusick (Bill's genetist at Hopkins when he was a child): http://www.hopkinsmedicine.org/Press_releases/2004/06_29_04.html.