Tuesday, July 19, 2011

My Beautiful Smile Maker

Here's a video of Madison walking across the grass in our yard.  She is now walking on gravel and grass, and seems to enjoy the challenge!  Taking her camping really helped with that.  She walked all over our campsite (and fell a lot).  She isn't as afraid of falling now though.  haha!  She has also started walking around the house without her braces on.  I'm so impressed with this little smile-maker.  :)

Another mom posted today that she hopes she never tires of watching her little miracle walk.  I know I never will.  She's a reminder every day of the grace of God in our lives...


  1. Love it!! It's amazing to see the personality that God gave her, too! She's a fighter. ;)


  2. Yay! She is walking so great!!!!
    Nate has been walking independently for 2 years now, and I remember feeling the exact same way. And now I do take it for granted way too often, but just today I looked up at Nate playing on the beach and marveled at him walking and knew that that wasn't a given and was a miracle.

    Also, I think I saw you posted on facebook the other day about walking without braces and if that was okay? Nate walks around without his braces on a lot, and I thought it was good--that he was building up muscles. His PT does not approve. She said yes he needs to build muscles, but if his ankle is all off kilter, it hurts his knees. He could be damaging his joints. So she said to keep it to a minimum. But we don't.

  3. Oh I LOVE her spirit!! Definitely made me smile!! She is one of our many inspirations, and to see her take on any challenge makes me believe my Maddie will too!

  4. Hello Kim,

    I wanted to stop by to let you know that on November 30th, 2011 at 7pm Dr. Marc Levitt, Director of The Cincinnati Colorectal Center for Children, will be holding an online Q & A relating to fecal incontinence due to Spina Bifida, as well as, explaining the Bowel Management Program he has designed to battle this difficult problem. The RSVP page is posted below if you are interested in logging on and attending and please feel free to contact me with any questions you may have concerning the event. Hope all is well and I hope you find this resource helpful on your journey!

    RSVP: http://www.eventbrite.com/event/2504065728


    John Martin
    Partner's Hub

  5. Hi Kim,

    I stumbled upon your blog, and reading few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

    Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

    I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

    Warmest regards and happy holidays,


  6. Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: http://www.eventbrite.com/event/2912706985. If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) partnershub.com. Thanks!


Madison Walking 22 1//2 months old! Happy Thanksgiving!!

Madison and Mommy

Madison right before her surgery on August 25th 2009

Madison almost 6 months