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Pin It feel free to share any questions comments or anything on your mind you may have:
littlerightleg@gmail.com
havalynnauss@rorybug.com

7 comments:

  1. Hi there,
    My name is Nikki, my daughters name is Norah. My husband and I have been reading your blog about Rory. She's almost five weeks old and has the same condition, atleast as far as we know. She's in a hip brace at the moment. We plan on seeing dr. Paley soon to assess the details of her condition. It has been helpful looking at the pictures of your sweet girl. I'm having a very hard time lately as I attempt to begin the process of dealing with all of this. I did start writing about it and that seems to provide an outlet for me. I'd really like it if we could keep in touch a bit? Hope to hear from you :) Nikki Howes

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  2. Hi! We take Norah to see Paley tomorrow. We have a brief list of questions for him. I was wondering if you had any suggestions on what to ask?it always seems you think of a question after the fact and wish you addressed it, so I was wondering if after you left the 1st appt if there were any questions you wished you asked? Any help would be so appreciated!and any tips on surviving a day long appt with a 9mth old also! :)

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    Replies
    1. So sorry it has taken me so long to get back to you- we have been having issues with our internet lately with our move! I hope your appointment went well. First, come prepared with snacks and drinks for Norah, Dr. Paley is such a great doctor and everyone wants a part of his day, so you may find your appointment being delayed a bit. I asked him a million questions- mainly just want the next steps were for Rory and her progress. Then we took one step at a time; I would ask him what the next thing we needed to do with her was, because its so easy to concentrate on the lengthening and other surgeries; so I would focus on what the next steps are. They have a play room there for kids but I know the ipad has helped us out immensely on our travels to florida! Please let me know how the appointment went!

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  3. Good morning, my name is Chris and I had the privilege of studying under your husbamd, Dr. Nauss, this fall. He shared your blog about Rory and I periodiaclly check in and applaud her (and the family) for each milestone! I'm contacting you today to share with you a viable option to assist with Rory(or any other child in need)

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  4. Sorry, hit publish before I finished...
    with the cost of care, doctors appts, surgery, transport, transport of one parent, p/t, up until the age of 18. The child also gains lifetime aftercare for any issues that may arise after the age of 18, though the Shriners. The ONLY requirement is that you all (if so inclined) contact the Shiner's as they cannot contact you. If you are interested in more information and/or a contact, please feel free to contact me at cb0041194@otc.edu and I will gladly get the info to you. I am mot, in any way, affiliated with the Shriner's other than most of the men in my family were Shriners in some facet all of my life.
    Best wishes and warm regards,
    Chris B.

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  5. I came across your web page by doing some stupid little thing on facebook, only i typed in my little girl's name and here I am. My name is Rachel and my Daughter's name is Rory Jane, she is 7. I was reading your Rory's story and she is a very brave little girl and you momma are awesome. I was born with Spina Bifida and have had I have no idea how many surgeries and hospital visits, etc. I just wanted to let you know I think you are an amazing mommy. My mom was a single mom and had to go at most of my medical stuff alone, no one ever told her how amazing she was. Good Luck to you and Your Rory! I will be checking back for updates!

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  6. I came across your web page by doing some stupid little thing on facebook, only i typed in my little girl's name and here I am. My name is Rachel and my Daughter's name is Rory Jane, she is 7. I was reading your Rory's story and she is a very brave little girl and you momma are awesome. I was born with Spina Bifida and have had I have no idea how many surgeries and hospital visits, etc. I just wanted to let you know I think you are an amazing mommy. My mom was a single mom and had to go at most of my medical stuff alone, no one ever told her how amazing she was. Good Luck to you and Your Rory! I will be checking back for updates!

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