Sacrificing My 21st Birthday for Important Medical Appointments

Making sacrifices is all part of being a special needs parent, says this columnist

Keara Engle avatar

by Keara Engle |

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As parents, we tend to put our children before ourselves — especially when they have special needs. Some of our children require numerous therapies and appointments with specialists. They may also need more help than other children their age. As a result, parents must make some sacrifices from time to time.

This was the case for me last week on my 21st birthday. I was up before the sun to prepare for two appointments. My 4-year-old son, Cayden, who has infantile-onset Pompe disease, was seeing one of his specialists, and I had a visit scheduled with my OB-GYN.

Although it was my birthday, I wasn’t upset that we had a busy day ahead of us. Missing out on holidays and birthdays is something I’ve gotten used to over the years.

Rescheduling Cayden’s appointment was certainly an option, but I’m the type of person who likes to get things over and done with. Plus, I’m nearing my due date with Cayden’s little brother, so I’ve been trying to make sure that Cayden is caught up with all of his appointments beforehand.

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Cayden had a checkup with his otolaryngologist (an ears, nose, and throat doctor, or ENT) to reassess his mild hearing loss and examine the new set of ear tubes he had placed about a month ago. The hearing test showed that Cayden’s still experiencing some mild hearing loss, although I’ve personally noticed a big improvement with the tubes. He seems to hear us better when we talk and is even speaking more clearly.

When the doctor looked inside Cayden’s ears, he noticed some old, dried-up blood stuck on the ends of the tubes, which could be contributing to his hearing loss. To combat this issue, the ENT prescribed antibiotic drops to go in his ears for 10 days. We’ll return in about three months for another hearing test to see if there’s any difference.

Although the visit went OK, it still made for a long day. By the time we got home, we were both ready for a nap; however, I still had the checkup with my OB-GYN to check on the baby. These appointments are getting more frequent as I near the end of my pregnancy. Luckily, everything was fine, and I was able to finally go home and relax.

I’ve had to make a lot of sacrifices since I became a mother. For me, this was a minor one. I’ll have more birthdays to celebrate, so I’m not bummed that I had some important things to take care of on my special day. After all, I’m a completely legal adult now, and adulting isn’t always fun and games — even if we think it is as kids!

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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