Deonna Rae Mayabb was born a healthy baby girl on April 21, 2004. She weighed 6 lbs. 7 oz. and was 19 ½ in. long. From birth to 9 months she did not meet many of her milestones and by her 1st birthday, she was not crawling and the few words she had were all but lost. Deonna started to crawl at 13 months and at 16 months started receiving early intervention to see if we could get her to meet some of the milestones. We had been seeing neurologists and the doctor’s kept telling me that the test results were showing there was no seizure activity. Also in October of 2005 Deonna was given a diagnosis of Autism. It wasn’t until December of 2005 where she took her first steps, just 2 weeks after having tubes placed in her ears. That was a wonderful Christmas present from Deonna to us.
2006 brought Deonna the whole new world of walking and climbing around the house on her dresser and her bed, where early intervention played a major role. Deonna endured 2 eye-muscle surgeries in that calendar year. One of Deonna’s favorite activities was to climb out of bed, open her dresser drawers, climb up to her t.v., and proceed to turn her t.v. on as loud as it would go and turn it to the Spanish channel no matter what channel we had left it on at 2:00 a.m. and proceed to fall asleep on her floor. This happened countless times . As 2007 rolled in Deonna was cruising the house and exploring like any toddler about the same age. In California at the age of 3, she had graduated the early intervention program and began preschool.
Following her short 3 months in a preschool setting her and her family moved to Ogden, Utah. Her life in turmoil and on life support on the 18th of October 2007. She began having grand mal seizures and no doctors could explain why they were happening. For days I did not see my baby girl open her eyes fearing that this would be the last time I would get to see her, due to the fact that every time Primary Children’s Medical Center PICU tried taking her off life support she would not breathe on her own. At this point in my life, this by far had been the hardest thing I would have ever had to gone through. When Deonna finally started to come around on her own days later the doctors tried many different medications all of which changed her tremendously. After this episode, the curious, wandering, adventurous little girl was gone , and for months we fought balances of medications and seizures to bring the little girl back.
Sometime in the Spring of 2008 when medications were lessened and small seizures were allowed to occur, Deonna started to express a whole new appearance. The wandering and adventurous girl never returned, however a smile and eyes that talked that could melt any frozen heart emerged. Deonna developed a new personality in which her laughter and smiles brightened even her darkest days. The start of a new school year brought her into the Northern Utah Autism Program (NUAP), followed again by an October bought of hospital stays because of major seizures.
The end of 2008 through 2009 Deonna fought through all of her seizures with a smile that only could be described as heaven sent. Deonna would see another eye surgery, a placement of a vagal nerve stimulator (VNS), a tonsillectomy and adenoidectomy, a placement of a G-tube, with countless EEG’s and sleep studies, along with one more stint on life support through the end of 2010. She got a diagnosis change in February 2011 of Rett Syndrome. With hindsight being 20/20 and with the research being vigorously pursued within the following weeks, Deonna’s diagnosis was relatively easy to trace a backwards timeline that met all expectations of our Rett children. Deonna has endured countless tests over the past 4 years since her Rett diagnosis. Numerous hospital stays, 3 visits to the Bluebird Rett Center at Texas Children’s Hospital, 1 visit to Colorado Children’s Hospital, and she has done all these as the happiest little girl you will ever meet. Always smiling, always laughing, and always trying to tell you something with her eyes. Deonna has never let her Autism or Rett diagnosis slow her down. She was the guest of the year at Wolf Mountain Ski Resort 2010-2011 in which her dad built her a custom sled so that she could enjoy snowboarding with the family. Deonna has been a season ticket holder for the Utah Grizzlies for the past 3 years. She loves being on the ice in her wheelchair and getting all the attention from all the players. This past summer she was able to enjoy bicycling with her family as her dad custom built a towable trailer for her wheelchair. This brought her great laughter and tons of smiles. Deonna is about to embark on a new family activity this year in her newly customized motorcycle sidecar. Deonna will turn 11 this month (April) and she has endured more that we could ever imagine all while being one of the happiest kids we have ever seen. If you ever have the chance to meet Deonna, please stop and say hi, because no matter how bad your day has been she will brighten it.
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