Musings of a Marfan Mom

Flashback

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kid dressed as dinosaur

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6 Comments

  1. What a cutie! They grow up so fast!

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  2. OF COURSE! I can’t imagine any devoted, advocating mother like yourself not wishing that life could be simpler for your whole family. You do the best you can with the cards you’ve been dealt, but who wouldn’t want their child to be free of their special needs and for a life that’s more care-free.
    I don’t know if this is the right forum to pick your brain, but since I can’t find a “search” function on your blog to help me quickly navigate thru past topics you’ve touched on, I”m wondering where you are in your treatment plan, regarding beta-blockers vs Losartan. Also, are you planning to go to the L.A. Conference this summer?
    You are a wonderful, strong mama and just hang in there.

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    marfmom Reply:

    Search bar is just under my header, next to my button :-) I’ll shoot you an email later today to answer your question as I have’t talked about the meds I take on here. I am planning to go to LA. Are you?

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  3. p.s. i’m sorry, i meant to write this under the “Treadmill” entry, not under the adorable “Flashback” photo.

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  4. yeah, i live in l.a. and the genetics team i’m seeing at cedars are among the people organizing the event, i think. i haven’t registered for the event though, but the dr’s/counselors were all a-twitter abt it yesterday and talking about all the great svcs that are going to be offered at the convention, so i’d feel silly not going to it, though it is depressing to think about Marfan, for me.

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    marfmom Reply:

    You can’t register till sometime in March, so you’ve got time yet :) I know parts of Marfan can be depressing, but conference is SO much fun! Have you been to one before?

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