1p36 Deletion Syndrome, Coping, Faith

Everyday Miracles

For my first post, I’d like to share a brief snapshot from the past year, which explains the name of the blog. Although I’m starting on a high note, and my hope is to keep the overall content ocropped-unknown-7.jpegf the blog positive, please know that I will not white wash anything. Part of my goal in sharing these experiences is to encourage other families that they are not alone. And without honesty,  genuine connections can’t be made. Cheers to being real and looking for the best in every situation!

On July 25, 2016, Maddie was diagnosed with a genetic condition called 1p36, which is a type of chromosome deletion. It’s a fairly rare condition, and was discovered through genetic testing that we underwent after we found that she is Epileptic. She was eight months old, and up to that point we’d had no reason to think that she might have  developmental issues. But with this diagnosis came a long list of predictions for her future. Everything from eyesight and hearing loss, to physical and mental limitations. With one phone call our lives were turned upside down. I felt like I didn’t know my own baby. To say that we were devastated would be an understatement. Continue reading “Everyday Miracles”

Celebrations, Events, Heart Defects

My Reason “Why”- Our story for the Heart Walk 2017


Our daughter, Madison Grace Riebel, was born on November 5, 2015 with a heart defect called Patent Ductus Arteriosus (PDA). This condition often corrects itself during the first year of life. However, due to the severity of Maddie’s defect, this turned out not to be true in her case. During her first eight months, we spent a lot of time at Cincinnati Children’s Hospital. We were in the NICU for three weeks due to oxygen desaturations. Once we got that under control we went home, but were then hospitalized with bronchiolitis (worsened by the PDA), and lived with that February through June. Then in June we ended up in the Cardiac NICU with pneumonia derived from RSV that went undiagnosed. Again, a complication of the PDA. In August Maddie had surgery to correct the PDA. Her cardiologist said that the PDA was much larger than she expected, and it would not have closed on its own. Amazingly, the procedure was minimally invasive, and we returned home the next day. Since that time, Maddie has had a huge increase in her energy level. She’s gotten several colds and upper respiratory infections while at daycare, but has recovered in a ‘normal’ amount of time. Her quality of life is excellent, and we’re so thankful for all the great care that she’s received. In late January, her cardiologist said that we could consider her heart healed, and we will not have another appointment for two years!