Comments for The Road Less Traveled

Comment on About by Divine Lunacy

Divine Lunacy — Tue, 04 Dec 2012 01:53:56 +0000

I have just nominated you for a Illuminating Blogger Award: http://divine-lunacy.com/2012/12/03/illuminating-blogger-award/

Comment on Loeys Dietz Foundation Conference by Illuminating Blogger Award | Divine Lunacy

Illuminating Blogger Award | Divine Lunacy — Tue, 04 Dec 2012 01:45:16 +0000

[...] 3. The Road Less Traveled [...]

Comment on Loeys Dietz Foundation Conference by Katie Michele

Katie Michele — Tue, 18 Sep 2012 04:24:26 +0000

Hi, I’m a 19 year old blogger who suffers from a connective tissue disorder (they think that it’s Marfan Syndrome). You got to meet Dr. Dietz, that’s wonderful!! He seems like such an amazing doctor. I’m glad that you got the chance to go to conference too, I was able to go to the nmf one last year for the first time and it was life changing. Your son is so adorable.

Anyways, I just wanted to say that I’m a fan of your blog and that I nominated you for the “sisterhood of the world bloggers award”. http://connectivetissuedisorders.wordpress.com/2012/09/17/sisterhood-of-the-world-bloggers-award/
It’s an award/tradition passed around in order to show appreciation for your fellow bloggers and blogs that you really enjoy.

Comment on Loeys Dietz Foundation Conference by Prina Patel

Prina Patel — Thu, 23 Aug 2012 22:12:38 +0000

Kirsty thanks for sharing your experience. It is true no matter how big your support network is it is not the same unless you share it with those going through it with you. We are in London and I do not know of anyone here although I am sure there are some families in the U.K. My husband and I were thinking it would be beneficial to go to one of the conferences with our daughters to learn more and meet others to get that reassurance that you got and hope to make it one year soon.

Comment on Loeys Dietz Foundation Conference by kristym2828

kristym2828 — Thu, 23 Aug 2012 19:08:38 +0000

Hi Maya!

We love our cardiologist! Dr. Jeanne James. Sure, please add it to your blog roll
Thanks for the support and encouragement!!

Comment on I’m Really Not Crazy… by Maya (@MarfMom)

Maya (@MarfMom) — Thu, 23 Aug 2012 18:29:24 +0000

How frustrating!!! We’ve BTDT before too. My mother had doctors telling her she was sleep deprived and a hysterical first time mother when I was a baby (turns out I had a major hernia) and just recently my husband and I have gone through GI issues with Julian. The pediatrician and GI put me off for about 6 months, but we finally figured out that he has a parasite. I’m glad the neurologist took you seriously and that your son could get what he needed. I hope his surgery went well.

Comment on Loeys Dietz Foundation Conference by Maya (@MarfMom)

Maya (@MarfMom) — Thu, 23 Aug 2012 18:17:54 +0000

Hi! My name is Maya, and my son Julian and I have Marfan. I found your blog through the LDSF post on Facebook. We’re in Ohio too! But, we’re in Cleveland. Do you like you cardio at Cinci Children’s? I have a friend who is looking for one down there.

Could I add your blog to my Marfan and Related Disorders blog roll? I blog at http://marfmom.com.

Your son is super cute, and I’m glad you had a great experience at conference! I remember the first time that I went to a Marfan conference, when I was a teen. The size of the the program was about the same as this year’s LDSF conference. It was life-changing! Nothing quite like connecting with other families who Get It.

Comment on Loeys Dietz Foundation Conference by wendygottus

wendygottus — Fri, 17 Aug 2012 14:35:14 +0000

Kristy, I can completely relate to your story. My son was diagnosed with LDS when he was 3 (he’s 7 now), and we were able to go to a Marfan’s Conference a couple of years ago when it was in Houston (where we live). I was amazed at the others there with LDS and how similar they all were. Also, Dr. Dietz was there and I have a picture of him holding Ethan (our son) just like the one you have of him with Wyatt! The experience was surreal. It was bittersweet for me. I was so happy to have some understanding and some answers, but very much wishing that the whole thing wasn’t happening at all for my little boy. I follow your blog, as well as several Facebook pages that have to do with LDS, and it helps me tremendously. Thank you.

Wendy

Comment on Loeys Dietz Foundation Conference by Marcy

Marcy — Fri, 17 Aug 2012 11:17:14 +0000

So glad you found support in the LDS “family”….no one can really understand what you are going through other than someone who has been there. Prayers will continue .

Comment on Loeys Dietz Foundation Conference by Sarah

Sarah — Fri, 17 Aug 2012 05:28:27 +0000

Amazing job Kristy! Thank you for sharing.