Luisa was our Apple Pick of the month two years ago just as she was turning one year old. You can read her original post here, where her mom goes into more detail about the first few months of her life in the NICU looking for a diagnosis and learning about CCHS. Luisa has grown a lot in the last two years as you're about to see!
Luisa Lee Nicol is a three-year-old girl from Portland, Texas, who has a wonderful imagination and was born about a month early. She exhibited signs of apnea and brady cardia, but none of the typical treatments seemed to be working. Luisa was in the NICU for 5 weeks when we finally received a diagnosis of central congenital hypoventilation syndrome, or CCHS. After three months in the NICU, we brought her home complete with a tracheostomy and ventilator dependency 24/7 with round the clock nursing care.
As she grew and became more active, I (her mom) began trailing Luisa off the ventilator and watching her oxygen saturation. Soon we were able to trial her on a speaking valve and then a trach cap, enabling her to begin making sounds! Now Luisa is only ventilated when she is sleeping, which is a common need of individuals with CCHS. CCHS is life-threatening and incurable, which used to sound terrifying to us, but it is easily managed with medical interventions such as a tracheostomy and ventilator.
A major challenge that we face and will continue to face is helping others understand that Luisa is a pretty normal kid. It’s hard for people to understand that a child can have a tracheostomy and still do all the things that other kids can do. We don’t want to hold her back, and she is ready to try everything!
Luisa has a great sense of humor and plays well by herself or with others. She loves music, trains, and dancing. At three years old she knows most of her ABCs and can count to 10! Her favorite store is Target and she has a lovely imagination.
Luisa has overcome challenges like learning to breathe with a trach cap and learning to bottle feed after being tube fed for the first three months of her life, but I always say the greatest challenges we face have nothing to do with Luisa’s disability. The greatest challenges come from others who have assumptions about Luisa’s disability, and sadly some of those people have been doctors and family members. Hospital stays have left her a bit traumatized in medical settings as well.
There are no words that can describe the joy I feel when I look at my daughter. I experience joy every time we do something that I once thought we would never be able to do, like going to the beach, or Dairy Queen, or taking her down a water slide. Having a supportive and well-run DME company has also changed our quality of life. We love Apple HMS!
Thank you to Luisa and her family for sharing this update with us! If you'd like to read the original post about the first year of Luisa's life, click here.