Next Up: A visit to the Down syndrome clinic

Kissing Harper
After the past 2 months, we have our routine of doctor appointments down to a science.

Or so I thought. At our first appointment to see Dr. Diane Langkamp at Akron Children’s Hospital’s Down Syndrome Clinic, Harper decided she did not want to play.

To start off, Harper peed on everything while the nurse tried to check her vitals. She wiggled around to make getting accurate height and weight difficult.

Harper decided she wanted to start off the appointment by peeing everywhere.

Harper decided she wanted to start off the appointment by peeing everywhere.

Who knew a 2-month-old could be so sassy?

I didn’t know what to expect of this appointment, but that didn’t matter. Social worker Cindy King came in and told us what was going to happen at this appointment and to help us get scheduled for our next one.

Dr. Langkamp came in next and immediately asked me what concerns I had. I let her know that I felt Harper was behind developmentally than other children with Down syndrome. I knew some moms of children that are the same age had already started therapies.

She was quick to reassure Aaron and me that with the issues with her eyes and heart, Harper was going to go at her own pace.

She went over everything that has happened with Harper since birth so we would be on the same page.

Dr. Langkamp was happy with how her heart has been and that she was making great progress with her eyes. Harper appears to be focusing on our faces and starting to track things with her eyes.

Next Dr. Langkamp gave her an exam, which Harper didn’t cooperate with. She doesn’t like being messed with.

Harper did not want to participate with Dr. Langkamp's exam.

Harper did not want to participate with Dr. Langkamp’s exam.

Unfortunately, we couldn’t go over our genetics test because the results seem to have been lost in translation.

The test would have shown us what form of Down syndrome Harper had, trisomy 21 (the most common in 95 percent of cases), translocation or mosaic. Dr. Langkamp plans to have a genetics counselor search for the results because it’s important information to have.

Harper was exhausted after the visit and almost slept for the rest of the day.

Harper was exhausted after the visit and almost slept for the rest of the day.

Our next appointment at the clinic is in August, where we will meet with physical therapy, occupational therapy, speech, social work and other departments that Harper requires care from. This team will provide care for Harper over the next few years.

Having the Down Syndrome Clinic available as a resource, so close to home, is very reassuring. They know her condition better than anyone.

We see so many doctors that we have begun to get some conflicting advice. When that happens, I know to call the clinic. They know what’s best for Harper. She is their specialty.

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tonyacunningham@chmca.org' About Tonya Cunningham - Mom Blogger

Tonya Cunningham lives in Green, Ohio, with her husband, Aaron, and children, Kaitlyn, Landon and Harper. She is a first-grade teacher at Walker Elementary School in Canton. Tonya shares her experiences of overcoming the odds in her “Ups and Downs with Harper” blog, after receiving the surprise of a Down syndrome and heart defect diagnoses at birth.

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