“By the time Coop was just a few months old he already had many surgeries under his belt. After the biggest of them, open heart surgery, the attending warned her med students that Cooper was throwing the complications manual at them. He finally came home after 5 weeks, surviving a septic infection, heart block, and needing a second surgery to place a permanent pacemaker.
He continued to test his doctors when at just 2 years old he was diagnosed with Crohn’s disease. And it turned our world upside down. We had handled Down syndrome, feeding issues, g-tube surgery, and open heart surgery; but Crohn’s by far would be the greatest hurdle to overcome.
Cooper spent years in and out of hospitals. So many failed meds. Daily pain and tears and tummy aches. Missed school and holidays and more pokes and hospital admissions than we can count. It was heart wrenching. Then at the age of 11 our 39 pound very very sick child was given a g-tube for the second time in his life, and an ileostomy. We thought it was the end of the world, but it was a new beginning.
Coop has been able to gain weight and grow, he no longer has daily pain, and he’s such a changed kid his siblings said he’s “Cooper 2.0.” Of course, ileostomy and g-tube life isn’t all rainbows and roses, but thankfully life is so much better for Coop with them. He still receives Remicade to keep things at bay, but now it can actually work to keep his Crohn’s quiet with his diseased colon out of the picture.
We are so thankful for parents and patients that have gone this road before us. (Although we wouldn’t wish Crohn’s on even our worst enemies). We learned so much about meds and doctors, tubes and ileostomies… And we are never alone with such a vast community of experts to lean on.”