How We Keep My Toddler Entertained During Infusions

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by Keara Engle |

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Once a week, my 3-year-old son, Cayden, receives a six-and-a-half-hour infusion for his infantile-onset Pompe disease. I’ve previously shared a look inside his home infusions. However, some people wonder how we can keep my son entertained and content for such a long period of time.

As Cayden has gotten older, the Lumizyme (alglucosidase alfa) infusions have gotten a bit harder. When he was younger, he would get them in the hospital overnight. This was nice because most of the time he was asleep, so he was unaware of what was happening.

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Once he had reached a stable point health-wise, we were approved to make the switch to home infusions. This setting is a lot better. Also, we have everything Cayden likes at home, which makes it easier to keep him entertained.

One of the things Cayden loves to do during infusions is color. The mom in me loves this activity for him because it helps with his fine motor skills. Crayons are a bit too hard for him to use since he can’t apply much pressure when coloring due to his low muscle tone. Markers are much easier, so that’s what he typically uses.

Another activity Cayden enjoys is playing with his blocks. He has a few different types. He stacks them up just to knock them over time and time again. This activity also helps with fine motor skills.

Throwing a ball back and forth is another common activity during infusion day. Sometimes Cayden likes to trick me and his nurse. He will act as if he’s going to throw it to one of us, just to trick us and throw it to the other. He enjoys making other people laugh. One of the benefits of throwing the ball is that it helps with hand-eye coordination.

Of course, he enjoys more laid-back activities as well, such as watching television or playing games on the iPad or iPod. We usually save these activities for last, so that he can get as much playtime in as possible before zoning into his TV shows or games.

Once his infusion is over, he usually takes a nap. It’s a long day and he uses up a lot of energy playing. He’s typically exhausted by the time the nurse leaves, and you can tell he is ready for a much-needed nap!

These are just some of the things we do to keep Cayden entertained while he is receiving his infusion. It’s not always easy to keep a toddler content while they are hooked up to an IV for hours. However, before you know it, it’s a part of your routine that you don’t even think twice about.


Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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