Meet Brody O.

Brody O.“It’s been such a hot summer, and that’s why he’s drinking so much.”, and “He’s soaking through diapers like crazy with all that he’s drinking!” That’s what I said for several weeks last summer about my sweet Brody. He would gulp down a sippy cup of milk or water in no time at all, and cry for more immediately when it was gone. He would wake in the middle of the night screaming for a drink, and would wake up completely soaked through his diaper and jammies, even with a middle of the night change, and at one point, even wearing two diapers. I called his pediatrician on a Wednesday knowing something wasn’t right. They agreed that he was probably just drinking so much because of the heat, but told me if he didn’t improve in a week to call back and they would test him for Diabetes. I remember being SO angry they would even suggest such a thing. No one in my family has that. My BABY does NOT have that!! That Saturday, we went to the Royals game. Brody had a diaper change right before we left the house, and by the time we got inside the stadium about thirty minutes later, my husband looked at me and said “He just soaked through his outfit!” We agreed to call the pediatrician back on Monday, but we didn’t make it that long. The next morning Brody woke up and had blood in his diaper. We drove straight to Children’s Mercy, told them about the blood in the diaper (which was unrelated and no big deal in the grand scheme of things, but it’s what got us to the hospital), the excessive drinking and soaking through the diapers. A short time later they came in and said they were going to test his blood sugar. 564. Normal we learned for a child his age is between 80-180. The nurse said “He has Type 1 Diabetes” and left the room. We looked at each other in shock. “He had a lot of Sweet Tarts at the game last night” I remember telling the nurse. They told us it still shouldn’t be that high. The next few hours, and eventually days were a blur, with a night spent in the PICU as he was in DKA (Diabetic Ketoacidosis), IV’s, learning how to count carbs, check blood sugars, and give shots to my poor sweet baby. That was on July 21, 2013. Brody was just 15 months old, and his whole life, and ours, had just changed forever.

We hoped to get Brody on an insulin pump right away per the Dr.’s recommendation so he could get the tiny doses his little body needs. Insurance denied it. They wanted six months of out of control blood sugars. The Dr. wrote a letter of appeal. Insurance denied it again. I called insurance daily, sent his logbooks, had our case manager do a personal review on his behalf. They denied it again. We started having fundraisers, selling Brodys Diabetic Dinosaur bracelets, anything we could think of to raise money for the pump. Fundraising and fighting insurance went on for 6 months, until they finally “approved” it. This was after the beginning of the year when our deductible started over, and with a high deductible, it still cost us the same amount, but supplies were less expensive. Brody started the Animas Ping pump on February 19, 2014. It is so nice to be able to let him eat whenever he wants without having to give him a shot every time he wants to eat. We are able to give him so much smaller doses, instead of guessing too much or not enough, which has helped his numbers greatly. We still struggle keeping his sugars in control, but Brody is a growing boy, so it will be ever changing.

We are so proud of the courage Brody has shown over the past ten months. He will pick which finger to test his sugar on and hold it out. He will take the meter from me and try to test his own sugar, along with trying to test the sugar of all his stuffed animals, including his wonderful bear Courage that we were lucky enough to receive in our Crate of Courage from Kids With Courage. He knows, and correctly uses, words no two year old should have to know, like pump, site, sugar check, ketones, and Diabetes (he says “Betes” with a pitiful pouty face). He loves Mickey Mouse, fishing, going on boat rides, playing outside and baseball. We are so grateful to have Kids With Courage. It’s amazing meeting other parents who know how you feel, what you’re going through, how hard it is, and just to listen when you’re having a bad day. It’s also heartbreaking and wonderful for me to see so many other children, who unfortunately are also struggling with T1D, but give me hope seeing how strong they are, how they play sports, and excel in school, and choose fundraising birthday parties over presents. As Brody gets older, he will be able to see that he is not alone. That he is awesome, he is strong, and that he can do anything because he has something amazing…COURAGE!