Musings of a Marfan Mom

Day 1 of our Mini (Doctor) Vacay

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Now that we’re moved from California, we no longer have the luxury of having all of our Marfan specialists less than an hour from home. This requires a rather long drive a few states away to see a couple of our doctors. And, since they don’t see patients on the same day, it’s a three day trip.

Luckily for me, 1) Mark was able to take some vacation time to accompany us so we could make it a mini vacation, 2) we’ve got the opportunity to catch up with some friends.

Through blogging, I’ve come to know two really neat women who are also part of the “Marfamily.” One has Marfan and the other is married to a man with Marfan; both have an affected child as well. We’ve been chatting for about 2 years now and I was so excited at the chance to meet them and their families in person on Sunday!


Jaime’s daughter was so good with the Menininho! He loved playing with her!

child with autism wearing headphones
I picked up some headphones for M to wear in crowded places and they worked pretty well! He wore them during some loud water play and to walk outside from the museum to the restaurant.


All the kids


Fab friends: Ang, me, and Jaime

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6 Comments

  1. It was soooo fun to meet you and Mark and the kiddos. Grace talked about M all the way home and all day today. She is already asking when we can see you guys again. :)

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  2. i found you a year or so ago when kelly’s korner did a “show us your special needs child” post. i immediately clicked over when i saw you had marfans and send my oldest friend, my sister from another mother, the one and only jaime, the link to your blog. of course, she already “knew” you! it makes me so happy that you all were able to meet yesterday! i love how the blogging world can make the real world seem so much smaller, especially when you are dealing with a rare disease like marfans. best of luck with your appointments at hopkins today!

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    marfmom Reply:

    The blogging world is awesome, and it’s even cooler when the blogging world and Marfan world combine! :-)

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    Jaime aka So Called Supermom Reply:

    Awww, Laura. The world is small. :) And I am really grateful to find other Marf-friends in that world. And best of all, have my real world friend read about Marfan online too!

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  3. So glad we got to meet you and your family!
    Can you email me one or two of the pics of us girls when you have a chance?

    [Reply]

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