“Sit still. Put a violently shaking vest on your torso. Sit up straight. Got it? OK, now hold a mask over your face. Take deep breaths, make sure you get all the vapors from the mask deep into your lungs. See you in 30 minutes. Oh, and we will be doing this twice a day, every day. If you get sick, we will do it three or four times. Let's do this!”
Sound about right? This is what I ask my son Major to do every single day. He was diagnosed with cystic fibrosis when he was 7 days old. When he was 12 weeks old, we started using a nebulizer to administer his lung medication. Initially, this took us about 10 minutes to complete. But because CF is a progressive disease, more medications have been added over time. What once took 10 minutes now takes 30 to 45. He also wears a vest to help break up the mucus gathering in his lungs. Major does this twice a day when healthy, and up to four times daily when he is ill.
Because he spends so much time in his vest, we have come up with many ways to keep him entertained! Here are my top five tips for keeping a toddler as happy as can be, while tethered to a vibrating miracle machine:
- Watch a movie. I know, I know -- limit toddler TV time! Despite all the criticisms of too much TV time for young kids, we have decided to let Major do whatever he wants for treatment time. You name it, we have watched it. Disney movies are his favorite, along with a bunch of educational programs on our public TV station in Iowa. The key here is to end TV time when the treatment is done. We never finish the movie after treatment. Rather, we pick up where we left off when the next treatment begins. This helps limit screen time.
- Read a book. Major has so many books that he loves. I find treatment to be a great time to introduce new ones. (He can't go anywhere!) If I read him a book he has heard over and over, he will get bored quickly. New books are great for this time because he is curious and will pay attention.
- Give breathing treatments to stuffed animals. Sometimes we take a nebulizer mask and pretend to give a breathing treatment to Superman or Bunny. Major loves this. I think it helps him feel some responsibility, like he's helping his little friends. Plus, it's something he can be in charge of. With so many things he can't control, this is one he can.
- Play with toys. Major loves Rescue Bots and superheroes. He can easily spend his 30 minutes transforming his Rescue Bots and acting out scenes with his superhero toys. This gets his imagination going and he tells us about what he's doing.
- Talk. We make plans for the day or at night, recap what we already did. We talk about preschool, sports, his friends, new activities he did that day, anything he wants! Major likes to make a list of fun places to go, so we will often grab a pen and paper and jot down what he wants to accomplish.
Our family is only three years into this, so I'm quite sure there are many ideas to come as he gets older. I can't wait to see how his treatment activities evolve over time.
What do us adults do during treatment? If Major is engrossed in a movie, I'll pop out and put a little makeup on, returning quickly to check in. I read, watch the movie with him, and almost always have a coffee cup nearby.
Let's add to the list! What do you like to do during treatment?
