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Macey Paup


Macey Elizabeth was born on February 21, 2003. She was welcomed by her parents (Tim & Carrie) and big sister Caleigh. She was diagnosed with Aicardi Syndrome at only 3 days old.

She began having seizures a few days later. Over the years we have tried many different seizure medications to try to gain the best seizure control possible. Currently she is on a combination of Zonegran and Keppra for her seizures.

Macey has faced a lot of challenges medically. She had a feeding tube very early on and also a Nissen Fundoplication to keep her from refluxing. In January of 2005, after many respiratory problems, Macey had surgery to receive a tracheotomy. Although it was a scary time for us, we are now so grateful for this surgery. We did not realize how hard she was working to breath prior to her trach, and now that she is having to put less effort into breathing, she is much more active and alert and able to put all of her energy into other things.

Macey continues to make strides at her own pace. She has gotten very good at activating her favorite toys by herself, with and without switches. She also loves using our iPad and enjoys several apps and books that she can help to navigate herself. Her favorites seem to be anything with lights or music.

Some of Macey's favorite things are listening to music, going on walks in her wheelchair (she loves feeling the wind and sun on her face..we usually get lots of big smiles on these days!), playing with anything silver or shiny (her favorite is mylar balloons), and spending time with her sisters.

Macey became a big sister in July 2008 when we welcomed our 3rd daughter, Kendall to the family. She is blessed to have two sisters who love her unconditionally and always find ways to include her in the fun!

She attends 4th grade four days a week and loves spending time with all the kids at school. She has a great group of therapists that work with her at school and her teacher and all of the staff are great at finding ways to keep her attention and use adaptive equipment so that she can participate in all aspects of school. She loves school and always comes home with a big smile on her face. She also gets excited when she hears the bus turn down our street to pick her up in the morning.

When Macey was first diagnosed with Aicardi Syndrome, it was a very difficult time for our family. We felt an incredible sense of sadness and loss. However, it did not take us long to realize what a huge blessing we had been given.

Macey brings so much joy, peace and happiness to our lives. She teaches us each and every day the things that are truly important in life.

We celebrate each accomplishment as it comes and we are always inspired by her positive spirit and happy outlook on life.

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09-27-2013