Sunday, May 22, 2011

"Bee"-ography Mondays

It's that time again, another life story written by the parent/caregiver of another little bee. Be sure to check back every Monday for a new "Bee"-graphy & new daily posts to come as well.
Mackenzie Nelson was born September 15, 2006 weighing in at 6 pounds 1 ounce, 18 1/4 inches long. To us, she was a perfect little baby girl. It wasn't until about 5 weeks after she was born that we found out she had Hydranencephaly. 

After the shock wore off, I decided that I was not going to treat her any differently than I would if she didn't have this condition, and I was going to make it a life time goal to prove to these medical professionals that she is so much more than they made her out to be and that she could live life just as the rest of us.

From that day on, I have done everything in my power to unleash Mackenzie's hidden potential. 

In 2008, we took our first trip to Tijuana Mexico for her first round of stem cells. We noticed a huge change in her awareness and her muscle tightness seemed to improve some. 

In August 2008, we started going to REACH Family Institute in Oregon where our lives were again changed. They truly focus on Mackenzie's abilities and teach us how to teach her to improve those abilities. 

In April 2010, Mackenzie proved that she could see. She was tracking, focusing, and just all around more aware of her surroundings. She communicates a lot with her eyes. She also proved that she has the ability to be mobile. She started to move herself down an inclined plane on her own by moving an arm and leg on one side of her body. 

In July 2010, an arrogant therapist badly injured Mackenzie by forcing her into a frog legged position beyond her limits. He sprained both of her hips and both sides of her lower back. This caused an enormous regression, and to this day, we are still battling her hips. We are at the point now of having to make the decision of whether or not to do surgery. So frustrating as she was doing so well before this incident. 

Mackenzie eats orally, and does so very well. She is "underweight" to the medical professionals, but she is healthy and growing, so I don't worry too much about it as she doesn't have the muscles that an "abled" child does. 

When told, Mackenzie can give kisses, she loves music, and even has favorite songs. 
She absolutely adores her baby sister, and she definitely knows who people are in her life. 

She was fortunate not to have to have a shunt placed. Mackenzie's favorite things are swinging, bouncing on the big therapy ball (the rougher, the harder she laughs), listening to music, and being outside. Her favorite texture is silk, she loves to be around other children, and I truly believe that this has helped her in so many ways throughout her life. She does have seizures, and is on Keppra to control them. She has not had a seizure in about 2 1/2 months now. 

Mackenzie has touched to lives of so many people. In fact, people that have never even met her have been touched by her story and her strength. She has changed my life in more ways than I can even begin to explain, the biggest being my outlook on life I guess. She has opened a door to a world I didn't even know existed, and I have become a much stronger person because of her. 
It is the support of others that has also helped me find this strength, and to see that there is life beyond the words of uneducated medical professionals. 

~Desiray Nelson, mother

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