Jonathan was diagnosed with hydrocephalus when he was six months old. We knew something was wrong because Jonathan cried and screamed anytime we tried to lay him down. At six months old, he could only sleep in his crib for eight minutes without waking up screaming and needing to be held.
Finding out that Jonathan had a life-long brain condition, requiring brain surgery, was a shock and difficult to comprehend. For months, we concentrated on his medical situation, making sure the shunt was working and meeting with numerous specialist to learn as much as we could about what was going on inside this tiny body. Then, it hit us like a ton of bricks….. this was forever. We needed to know more than just the medical side of Jonathan’s hydrocephalus and we felt a need to educate ourselves on how to help Jonathan live with his condition. I asked Jonathan’s pediatrician, Dr. Lutz, for help and asked him to recommend a neurosurgeon who would take the time to talk to us, be honest and direct, and talk in terms that we could understand. He suggested Michael Partington, M.D. at Gillette Specialty Healthcare.
I’ll never forget our first appointment with Dr. Partington. Our 4:30pm consultation turned into a ninety minute conversation, including answers to ALL the questions on our very long list! Over the past few years, Dr. Partington has patiently and thoroughly answered all our questions about how to live, as a family, with hydrocephalus. He’s helped us learn how to talk to other parents about hydrocephalus, plan for play dates, safely play sports, talk to the school and Jonathan’s teachers, tips for traveling, and SO much more!
Today, Jonathan is six years old and attends full day kindergarten. He goes to the library with his class, plays in the gym, eats in the cafeteria, and runs with his friends on the playground. Jonathan has playdates, goes to birthday parties, and loves to brag about catching more walleyes this summer than his Dad. He is the best of friends with his sister Abby, most of the time. Jonathan has a heart of gold. He’s so loving, and has the BEST sense of humor. I know most days Jonathan never thinks about his hydrocephalus and that makes us so happy. He’s just a regular kid, thanks to the team of professionals caring for him. We know he will always have hydrocephalus, but we have chosen not to let this define us as a family. It’s simply a part of us.
We feel so very blessed to have Gillette and all their experts on our team! Everyone we have worked with has been amazing and Jonathan truly feels like his trips to the clinic and stays in the hospital are fun. What a compliment! He enjoys the video games in the waiting room, the fabulous selection of toys brought into the hospital room by the Child Life Specialist, and still talks about the gift card he received for waiting patiently when an MRI was taking longer than normal. Doctor visits are a regular part of our life and always will be. At Gillette, we are welcomed, respected, and never made to feel rushed. This truly changes the experience. Thank you for making us feel cared for, like family.