Olivia Burr Olivia Burr

First post: 6/6/2017 Latest post: 11/17/2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. 

As many of you know Liv's history some of you may not know the depth of our journey.  Olivia Jean was born Sept 9, 2004. She was the perfect lil girl to us. Liv was taken pretty quickly after birth, we didn't know what was going on. My OB came to me in recovery  (from a C-section ) and his words I will never forget.  He said, " Kristen God has given you the most precious child, and I know having you for a mother she will achieve and overcome a lot of challenges.  She will change your life and you will change hers".  Liv  has Down syndrome, I don't typically say that to people not that I am ashamed but because I don't want that to define her.  Fast forward a bit, she has had several surgeries including, tonsils and adenoids removed, 3 port replacements, 5 or 6 eye surgeries, 2 foot surgeries. She has an immune defecientcy where she receives IVIG monthly to stay healthy.  She has had many challenges in her short life. She loves playing her guitar,  bike riding, watching her brother play baseball, traveling,  and swimming. 
I had been noticing for several years the way Liv walks and how she moves her hips.  She is very lax and flexible in her hips. Last year I started noticing she wasn't walking as far and her feet turned out more. We follow an amazing orthopedic guy so I went to see him in 2016. We discussed it a little and he told me recovery was tough she would have to learn to re-walk. I turned off and didn't want to hear anymore. I needed time to think and make sure everything I was seeing in her walking movements was correct and I needed time to absorb this. So I watched Liv for about 10 months. I decided it was the right thing and we need to do something about this. I went back to see ortho in May, we talked about hip surgery and then to my surprise her knees where now involved so we could fix that as well. We discussed options of doing one side at a time or both together. Recovery changes a little depending on what we choose.  Of course I don't want to choose any of it, but it is a quality of life. She can't make it even 1\4 mile before she is complaining of pain. That is no way to live so we are planning surgery for sometime in Nov 2017. Her hip problem is she has twisted femurs so he will correct that and the knees with some plating at the same time. She will have to have the plating removed in a year or 2 after surgery.  She will be inpatient until she is comfortable and pain is controlled.  She will be bed bound no weight bearing for at least a month then pool therapy first and land therapy to follow for 5 months learning to re-walk. This is going to be a tough surgery no doubt about it but I know Liv and I know she is going to fight and surprise them all with recovery. 

I created this so all my non Facebook friends can stay connected.  This is not for collecting money /fundraising so don't donate. If you wish to send Liv a card our address is 309 N. Washington Street, Desloge, Mo 63601. If you want to stop in and see us your welcome to but you might want to give us a heads up as I have no idea how we are going to be each day. Thank all for being with us on this journey.  Xoxo

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