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 is now 7 years old! In the past few years, she has made a lot of great strides. She has learned how to activate several toys all by herself. One of her favorites is a switch toy connected to a mini fan that she can turn on and off by herself. She especially enjoys playing with toys that are musical or light up.
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 big sister.
Macey became a big sister in July 2008 when we welcomed our 3rd daughter, Kendall to the family. Macey is blessed to have two sisters who love her unconditionally and always find ways to include her in the fun!
She attends 1st grade four days a week and loves being around the other children. 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!
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 has given us so much joy, peace and happiness in 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.
Visit Macey's website at:
www.maceyelizabeth.com
02-05-2010
