MaKayla is a nonverbal child with a wheelchair. Our brain makes some fluid everyday and it gets filtered out but MaKayla has a blockage that makes the fluid build up, so she has a tube in the back of her head to mange that fluid overload. Because MaKayla had so much fluid on her brain while I was pregnant with her, her brain didn’t have much space for brain to grow. So alot of the functions, and the ability to do things are affected by the pressure from the fluid build up. Which affects her ability to swallow, cough, walk, stand, crawl, speak, and many other things.
MaKayla is a very sweet, kind, loving girl who is blessed to be 19 yrs old. Before she was born, the doctor’s told us that MaKayla wouldn’t take not one breath. She was born at 36 weeks. She came out breathing all on her own. They said she wouldn’t eat. She ate some by mouth for years. She was in and out of Children’s Mercy for most of the first half of her life. She had a stroke at 3 yrs old which paralized her left side of her body. She was born with hydrocephalus (fluid on the brain) and had brain surgery at 4 days old to help manage that. She had her first seizure at 9 months old and they are her biggest health challenge to this date. We can’t count the amount of seizures she has in a single day. Today she is a High School Graduate of 2019!! She is a well known child. It amazes me how many people say, “Hi MaKayla” while she is out with family. I have never heard my daughter’s voice and it would be lovely.
She really wants to communicate but she doesn’t know how. She gets frustrated and just gives up because sometimes we can’t figure out what she wants. She loves to make choices and this will give her the ability to express herself. Her quality of life will increase a great deal.. Being able to know if she is in pain or what actually hurts will be a great help. She clearly understands what we are saying to her but to truly know her cognitive level is impossible because she can’t communicate.
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