| My Proudest Moment I was recently asked a question that has caused me to really think. The question was: What accomplishment/milestone that your child with Down syndrome reached made you the proudest? I thought hard about that. As you may or may not know, Makenzie has complex feeding issues. When Makenzie was born, we did not expect what we were faced with. Our baby had had Down syndrome. She was premature and never really learned how to suck, swallow and breath. An ng (nasogastric) tube was inserted, but was removed before we went home. Feeding was a constant struggle for Makenzie. To make matters worse, at 2 weeks old, Makenzie went into congestive heart failure. An ng tube was once again inserted so she wouldn't have to work so hard to feed. The ng tube caused severe reflux for Makenzie, so by the time she had her heart surgery, she was being totally fed by ng tube. In February 2001, Makenzie underwent open-heart surgery to have her AVSD heart defect repaired. The surgery was very successful and we believed that Makenzie would finally learn to take a bottle. This was not to be. As long as Makenzie had the ng tube, she refluxed and soon would not allow anything into her mouth, not even her hands. At this moment, all I could think was that Makenzie would never eat or drink. So now came the most difficult decision we had to make. We decided to have a g-tube surgically inserted. At 6 months old, my tiny little baby underwent her second surgery. This time to have a g-tube placed. About 2 months later, I noticed Makenzie putting her hands in her mouth without gagging. I now had a mission. I was determined, with the help of our wonderful OT, to get Makenzie to eat. By the time Makenzie turned 1, she was eating anything and everything. I never thought it would happen. That was a very proud moment for me, the moment I realized my baby COULD eat. My story does not end here though. The question really made me think about everything Makenzie has accomplished. When I worked so hard to teach her how to roll over, I said, "She'll never do it!" But 6 weeks after her heart repair, Makenzie rolled over all on her own. When I worked so hard to get her to sit up. I thought, "She'll never do it!" But at 10 months old, I sat her down and she didn't fall over. When I worked so hard to teach her how to clap her hands, I said, "She'll never do it!" But last week, when I told her not to grind her teeth, she looked at me, with her coy little smile, and clapped her tiny little hands. I don't say "She'll never do it!" anymore, instead I say "She'll do it when she's ready!" I will never again doubt Makenzie's abilities. That was my proudest moment, the moment I realized that my baby has many abilities and that she will accomplish everything at her own rate. Oh, I want to add, Makenzie is now working on drinking from a bottle, and I know she'll do it, WHEN SHE'S READY!!!!!!!! By Tina Cannon Date: March 4, 2002 |