Monday, December 19, 2011

Christmas Break Update!

It's been forever, I know! I am just going to send out a HUGE apology to all of you for such a big gap in blogging! Life has been a little crazy, in a good way, lately and unfortunately the blog has taken the back burner. I finally finished this last semester of nursing school so only one more semester left for me! I started a part time job also this last month or so. Just in case school, work, and being a mommy and wife wasn't keeping me busy I signed up for a half marathon! Why I decided I could run 13.1 miles I am really not certain, but I am going to in April! I am super excited to say I will be running for Team Spina Bifida at the Kentucky Derby marathon in April!!! I have started training for this race and am determined to run this for my little man. He is the true motivator behind this. Every mile I run, every step I take is for him. For the days when standing one more minute kills him, but he does it anyway. For when he wants to walk so bad and it is so hard, but he tries his best and does it. It's all about him, because every mile I can run has no comparison to the mountains he climbs every day.

Daddy is also on the move to fitness! He is working hard to shred some pounds and get in shape so I have to say how very proud I am of the progress he has made (though he refuses to run a half marathon)!

Now for the one you really want to hear about. Lane is awesome! He has progressed so much so fast lately. He started pulling up about a month or two ago and quickly started crawling on his hands and knees. He is now about 50/50 on army crawling and four point crawling. The biggest news (if you didn't catch it earlier) is Lane is taking steps with his walker!!!! With a little supervision and occasional support he can walk across my living room, which is really big. Without any help he is going about 6ft! This is absolutely amazing and I get so excited EVERY time! My little guy never fails to surprise me. Lane is also into everything, and I mean EVERYTHING. Nothing is safe now and it seems I can't baby proof enough, but I love it! He is starting to sign and talk a little. I am still hopeful this trach will be out before summer so he will be talking soon, but we are starting sign language just in case. He is picking it up fast and seems to like the extra ability to communicate. We also added on occupational therapy to work with his feeding skills as he chokes quite a bit. So far Lane is not too happy about it so progress is really slow. I have faith in our new OT and I am praying that he will be more accepting of her soon! We are headed to spina bifida clinic tomorrow so hopefully since I am on break I can get that update in here! Here are a few pics to hold you over until I get my camera uploaded, hopefully with the tomorrow post?! Merry Christmas!

Standing at the Window


At the toy box WITHOUT braces!


Always Happy!


Latest endeavor....climbing!

more to come....

2 comments:

  1. Hello!

    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 new year,

    Courtney

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  2. 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!

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