Caleb came via c-section and seemed perfect. When Caleb came back from his routine newborn hearing screen we were told he did not pass. The nurse assured us that babies sometimes fail and will pass the second time around.
Caleb failed the second time too. Our local hospital referred us to Akron Children’s Hospital, which is where our journey begins.
Caleb had his first set of PE tubes placed at 12 weeks. This was a very difficult time for us. We had a toddler and a newborn who could not hear at all. After the tubes Caleb’s hearing was restored and we thought we were in the clear.
Six months later Caleb’s tubes stopped working again. At this point Dr. Nelson had Caleb tested for hearing aids. Caleb didn’t qualify so we went for our second set of tubes.
Over the next 2 years Caleb would have 2 more sets of tubes placed and his tonsils and adenoids removed. At the age of 3 Caleb passed his first hearing test without the aide of tubes.
Dr. Nelson and his staff made our drive every couple of weeks worth it.
I wish Caleb’s journey ended here but unfortunately it does not. Caleb was placed in the hospital for low blood sugar. So we continue our drive every couple of weeks to see an endocrinologist.
I wish his diagnosis was easy but it isn’t. Type 1 and 2 diabetes were negative but Caleb’s sugar levels continued to be higher and lower than normal.
A year later we learned Caleb had an abnormal MODY screening, which tests for a genetically-linked form of diabetes called Maturity-Onset Diabetes of the Young. His body is not producing enough insulin.
We continue to check his blood sugar daily to monitor his levels.
Caleb just completed a stay on the epilepsy monitoring unit (EMU) at Akron Children’s for tremors. So now we see a neurologist along with an endocrinologist and geneticist for diabetes.
Through the countless trips to Akron, it’s 62 miles one way, Caleb has never complained. He smiles and loves through it all. I thank God every day for a great group of doctors who have tended to Caleb.
At the age of 5 he continues speech twice a week and remains active in church, soccer and baseball.
We call Akron Children’s our second home. We will continue to make the drive to see the best doctors.
As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.