Mack's Mom - Joubert Syndrome & Ocular Motor Apraxia

Tuesday, July 10, 2012

And she's off!

I have been looking forward to doing this post for quite some time!!

4th of July was a great day for us! We spent the day just hanging around the house. Mackenzie swam in her pool outside, BJ grilled out, and we set off fireworks in the evening. Mackenzie was taking a few steps here and there (like previous videos have shown) and before naptime I asked her if she wanted to walk back to her bed by herself. She did just that and then crawled back down the hall and stood up and did it again!:) Of course I caught it all on video.:)


That was just the beginning! Previously it seemed like Mackenzie needed an ending point when walking such as walking to the couch or ottoman. And she always needed prompting to walk. But after she walked to her bed by herself, she realized she could walk pretty much anywhere! In the past week she has crawled less and less and walked more and more from standing up and walking to BJ when he gets home from work, to continuing to walk to her bed, walking into the kitchen to eat, etc.

I decided to give her a "surprise" for her hard work (Target dollar bin is great!). So last night we gave her the bag of surprises which she loved.




Here is video of her walking all over the place last night!


Today was even more exciting! Mackenzie did not crawl AT ALL! She was determined to remain on her feet. She had many stumbles and falls but she got back up and kept walking. And to top it all off, Mackenzie walked on her own outside! We have been trying quite hard (especially in the past week) to get Mackenzie to let go of our hands and walk on her own outside but she refused. The large area and the feeling of grass when falling didn't seem too appealing to her. But with the help of 2 balloons from Chick Fil-A, she walked on her own. I asked her if she wanted me to tie the balloons to her so she could let them fly in the air while she walked and she nodded- Off she went!


This past week has been the best week for us! We have seen Mackenzie grow tremendously in such a short period of time. I have to admit that it still takes me by surprise when I see her stand up and just take off. And I think it takes her by surprise too. She constantly has a smile on her face when she's walking around (and so do we!).

It hasn't been all easy. She has had many stumbles and falls especially into the walls but she is learning how to catch herself and uses the wall to help keep her up. I know we have a long road of bumps and bruises ahead of us! But we don't mind. BJ and I are thrilled to see her walking so much (and my arms and back are thrilled to get some relief!:)) and she is loving her independence!

Here are more pictures from the 4th of July and some action shots of her walking.:)












Prayers are greatly appreciated as we go to the National Institute of Health very soon for a 4 day study. We already have our schedule which consists of seeing several doctors/numerous testing and most likely not much fun for Mackenzie. But we look forward to the answers we will receive from it. I will be sure to update as soon as I get a chance!

Lastly- Mackenzie says THANKS for all of the support she receives from everyone!


4 comments:

  1. Yay Mac!!! So glad to read this, can't wait for future updates. :-)

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  2. Great job Mac!!!! We love you guys and pray the spots next week go great!

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  3. Great job, Mackenzie! As I've said before, you are an amazing little girl! With amazing parents too!

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