Spring 2021 Edition
CHC nurse Nikki cares for CHC clients in Southwest Kansas, and is also part of the Leonard’s Legacy Foundation that helps rural special needs kids and their families get access to care. Nikki and client David have learned together to communicate in a new way—through sign language.
We asked Nikki to share the story.
I was one of two primary nurses when David first came home from the hospital. He needed round-the-clock care due to sleep apnea, great difficulty tolerating feedings, and very high risk for developing aspiration pneumonia. Later, when David was 2 years old, I came back as his full-time nurse. It’s been such a joy to see him grow and change over the years.
David was diagnosed with Pierre Robin syndrome, in which the jawbone doesn’t form correctly. Some kids are born without the bone at all. The main challenges of Pierre Robin syndrome are with breathing, eating, sleeping and speaking. Depending on his growth, David may be able to have surgery for his jaw rebuild when he is 7 years old. The improvements that have been made in this type of surgery are incredible, so there’s much hope for David and his future.
Our main goals are to keep David out of the hospital, keep him growing and healthy so he can have the jaw surgery, and later to get him through the post-surgical therapy. His family and I work very hard at decreasing infection risk through good hand washing and trach care. We make sure he gets a balanced diet as well as feeding supplements to help him keep gaining weight. He’s such a busy little guy that he seems to burn off every calorie we put in!
David has a busy mind and lots of energy, so it’s important to give him outlets with plenty of outdoor play and structured activities. This has helped with sleeping and behavior as well as learning letters and numbers. He loves learning and doing art projects alongside his older brother, Norlin. It is so good for them to have that bonding time and also for David to have that positive example.
David’s absolute favorite activity is playdough. We have lots of different cookie-cutter shapes, letters and numbers. He loves the heart shape, and will give the playdough hearts to people as his way of telling them he loves them. He holds up the heart for ‘I love you.’
Learning a New Language
About 99.5% of David’s communication is nonverbal. Even though he rarely speaks out loud, he understands THREE languages! His family speaks to him in Spanish, I speak to him in English, and he’s learning sign language.
David was only in preschool for two weeks before COVID-19 hit, but in that short time he had already learned two letters and knew how to sign them. There was no way I was letting this incredibly smart child not continue to progress. I knew the alphabet and some very basic signs, but I needed to know more. An occupational therapist from Arrowhead West in Dodge City helped me learn more signs so I can better communicate with David.
David quickly learned how to identify, write and sign the entire alphabet and numbers up to 10. He learned shapes, colors, clothing items, parts of the body, and signs to help him express his emotions. He’s like a little sponge, absorbing and retaining everything he learns. I’ve just been floored.
It cracks me up whenever we work on our writing exercises together. If David doesn’t like the way I write something, he’ll put an X on it and then put a checkmark next to his! There are a thousand things about him that are unique and completely charming.
Looking to the Future
My long term goal is to see David cross the stage at his high school graduation. He is so smart, he should graduate with honors.
David has one of the greatest rehab potentials of any patient I’ve seen. I want to see him get his jaw rebuilt, to learn to talk. I hope to one day be at his wedding. It is within his future to live a full and healthy life if we can make everything work.